Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,1991,0.htm Sun, 26 May 2013 00:00:00 GMT Sun, 26 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ On Dec 10, 2012 10:43 PM ksnow wrote: Normal 0 false false false EN-AU ZH-TW X-NONE MicrosoftInternetExplorer4 Hi, I am 28, from Australia. In July this year I was diagnosed with stage 4 Urachal 'poorly differentiated' neuroendocrine carcinoma and given a very poor prognosis. I have a primary urachal tumour, several small spots in the lungs and at least one enlarged lymph node.  I had four sessions of Carboplatin and Detopiside, but despite the  urachal tumor slightly shrinking, there is now a possible metastasis in the liver. My oncologist here is not giving us any other options or being very helpful with our thoughts about travelling overseas in the hope of finding clinical studies or any Doctor with more knowledge of this rare cancer. In the last 6 weeks (since completing the chemo) some of the nodules have grown 3-4mm. Radiation or removing the tumor is not an option as it has already spread. I am considering PDT treatment in China or a different combination of chemo.I would love to hear from anyone with the same or similar cancer to me, or anyone with info on PDT or Ukrain..or any other suggestions on treatment? Thank you  Hello, my name is Eric. I have replied to a few post's before. I can not believe that I have not heard from more people after reading what I have shared with them. I am a serviver of U U Adeno. I am very lucky of the few. I had surgery only. With lots of prayers a finding Kangon water I have avoided any other treatment. I erge any of us out here to look in to the water. If you want to know more write me our look up some of my old posts. Best regards. Eric TripleE Wed, 03 Apr 2013 00:00:00 GMT Hello.  I am 45 years old and was diagnosed with urachal cancer in early 2012.  My tumor was part adenocarcinoma and part sarcomatoid carcinoma.  I got advice from Dr. Jonathan Rosenberg at Sloan Kettering in New York City who prescribed a particular chemo regimen based on some research Sloan Kettering had done.  Dr. Arlene Siefker Radtke is the authority on this stuff and she is connected to many including my oncologist here in Montreal. Happy to help any way I can. Phil PhilA Wed, 03 Apr 2013 00:00:00 GMT On Dec 10, 2012 10:43 PM ksnow wrote: Normal 0 false false false EN-AU ZH-TW X-NONE MicrosoftInternetExplorer4 Hi, I am 28, from Australia. In July this year I was diagnosed with stage 4 Urachal 'poorly differentiated' neuroendocrine carcinoma and given a very poor prognosis. I have a primary urachal tumour, several small spots in the lungs and at least one enlarged lymph node.  I had four sessions of Carboplatin and Detopiside, but despite the  urachal tumor slightly shrinking, there is now a possible metastasis in the liver. My oncologist here is not giving us any other options or being very helpful with our thoughts about travelling overseas in the hope of finding clinical studies or any Doctor with more knowledge of this rare cancer. In the last 6 weeks (since completing the chemo) some of the nodules have grown 3-4mm. Radiation or removing the tumor is not an option as it has already spread. I am considering PDT treatment in China or a different combination of chemo.I would love to hear from anyone with the same or similar cancer to me, or anyone with info on PDT or Ukrain..or any other suggestions on treatment? Thank you  Hi ksnow, I am so sorry to hear of your cancer diagnosis. You seem so young to have been diagnosed with this rare form. Is it urachal adenocarcinoma? I was under the impression that this cancer does not usually exhibit until your 50's or 60's. As Mark has already mentioned, there are many doctors who can and have done treatments for this type of rare cancer. As you look back into these discussion threads, you will read many different options that doctors have used and patients have done well with. Also, as Mark has mentioned, MD Anderson in Houston, Texas has a Dr. Arlene Seifert-Radtke who has done some of the rare research research on urachal adenocarcinoma and has "created" a chemo regimen that my husband underwent. In addition, his doctor there also added an experimental drug (Vectibix - used in colon cancer) to the chemo regimen and the combination remarkably put the cancer into remission. I would strongly recommend you do more research and not give up hope. We were not given a good prognosis from our initial docotr and kept looking until we found someone who gave us hope and a plan. Good luck. I will keep you in my thoughts. Vivian  vtoole Wed, 12 Dec 2012 00:00:00 GMT On Dec 11, 2012 11:01 PM lia4477 wrote: Hi, my mom was diagnosed with urachal adenocarcinoma back in October, it is an invacive one into a bladder.  Stage 3 grade 2.  They removed the tumor completely as well as part of my moms bladder but the margins were not clear.  Doctors said that she needs radiation and oral chemo Capecitabine (brand name Xeloda).  Because the cancer cells are identical to the colon cancer that is why they will be treating with this drug.  Her tretments are supposed to start right after the holidays, January 7 or 8.  It's been 7 weeks since her sergery but she told me yesterday that she started to feel the pressure in her bladder again and feeling of not empting completely after she urinates.  Has anyone experienced that after the surgery well into the recovery?  I am very conserned if her cancer is reccuring that quickly!  We do have an appt. with her urologist who did the surgery on Friday. Hi Lia, My husband had the same diagnosis of urachal adenocarcinoma 3 years ago this Friday, although his margins were found to be clear. He too had surgery to remove part (1/2) of his bladder. However, I do not recall his feeling any sort of pressure with a feeling of inability to completely empty his bladder 7 weeks into recovery. I would seriously doubt if cancer spreading is the reason for this. There are sometimes post surgical sensations that my husband had and he returned to the doctor several times to make sure they were nothing serious. I wish your mother very good luck with the chemo she will be undergoing. My husband's doctor at MD Anderson in Houston Texas also put my husband on and experiemental druge (Vectibix) for 2 years every 3 weeks as the urachal adenocarcinoma cancer cell looks very much like colong cancer and Vectibix is used and approved for colon cancer. It had a very good result with my husband. I hope the same for your mother. Good luck with the treatments. If you have any other questions, please feel free to email me. Vivian vtoole Wed, 12 Dec 2012 00:00:00 GMT Hi, my mom was diagnosed with urachal adenocarcinoma back in October, it is an invacive one into a bladder.  Stage 3 grade 2.  They removed the tumor completely as well as part of my moms bladder but the margins were not clear.  Doctors said that she needs radiation and oral chemo Capecitabine (brand name Xeloda).  Because the cancer cells are identical to the colon cancer that is why they will be treating with this drug.  Her tretments are supposed to start right after the holidays, January 7 or 8.  It's been 7 weeks since her sergery but she told me yesterday that she started to feel the pressure in her bladder again and feeling of not empting completely after she urinates.  Has anyone experienced that after the surgery well into the recovery?  I am very conserned if her cancer is reccuring that quickly!  We do have an appt. with her urologist who did the surgery on Friday. lia4477 Tue, 11 Dec 2012 00:00:00 GMT On Dec 10, 2012 10:43 PM ksnow wrote: Normal 0 false false false EN-AU ZH-TW X-NONE MicrosoftInternetExplorer4 Hi, I am 28, from Australia. In July this year I was diagnosed with stage 4 Urachal 'poorly differentiated' neuroendocrine carcinoma and given a very poor prognosis. I have a primary urachal tumour, several small spots in the lungs and at least one enlarged lymph node.  I had four sessions of Carboplatin and Detopiside, but despite the  urachal tumor slightly shrinking, there is now a possible metastasis in the liver. My oncologist here is not giving us any other options or being very helpful with our thoughts about travelling overseas in the hope of finding clinical studies or any Doctor with more knowledge of this rare cancer. In the last 6 weeks (since completing the chemo) some of the nodules have grown 3-4mm. Radiation or removing the tumor is not an option as it has already spread. I am considering PDT treatment in China or a different combination of chemo.I would love to hear from anyone with the same or similar cancer to me, or anyone with info on PDT or Ukrain..or any other suggestions on treatment? Thank you  Hi ksnow Sorry to hear about your progosis - don't give up. Going back in this thread you should find a wealth of information, I for instance did just write some days ago about my chemo treatment these last 6 month. The thing is that there a probably very few doctors worldwide which can actually claim to have any know-how about urachal cancer (maybe apart from Dr. Dr. Seifert Radke at MD Anderson). In the end you need an oncologist with common sense, surely you should find such a doc in Australia as well. I don't know anything about PDT, so cannot help you there. I'lle be happy to give you any detailed information from my treatments, just mail me. Take care, Mark MarkVMueller Tue, 11 Dec 2012 00:00:00 GMT Normal 0 false false false EN-AU ZH-TW X-NONE MicrosoftInternetExplorer4 Hi, I am 28, from Australia. In July this year I was diagnosed with stage 4 Urachal 'poorly differentiated' neuroendocrine carcinoma and given a very poor prognosis. I have a primary urachal tumour, several small spots in the lungs and at least one enlarged lymph node.  I had four sessions of Carboplatin and Detopiside, but despite the  urachal tumor slightly shrinking, there is now a possible metastasis in the liver. My oncologist here is not giving us any other options or being very helpful with our thoughts about travelling overseas in the hope of finding clinical studies or any Doctor with more knowledge of this rare cancer. In the last 6 weeks (since completing the chemo) some of the nodules have grown 3-4mm. Radiation or removing the tumor is not an option as it has already spread. I am considering PDT treatment in China or a different combination of chemo.I would love to hear from anyone with the same or similar cancer to me, or anyone with info on PDT or Ukrain..or any other suggestions on treatment? Thank you   ksnow Mon, 10 Dec 2012 00:00:00 GMT On Dec 09, 2012 10:37 PM Tiggi wrote: Hello, Thank you for that advice, will definitely get in touch. Has your husband been diagnosed with urachal cancer? Hope you don't mind me asking, it is just difficult to find someone else in the uk with the same diagnosis as my father. Take care TiggiYes Tiggi We had never heard of urachal cancer either, nor had my sister who has been a nurse for 30 years.  I believe the Prof was also working with a patient in Ireland. Best wishes to you and your father. Inez Geoffrey_Paul Mon, 10 Dec 2012 00:00:00 GMT Hi Steve, Apologies for the late reply, been rather hectic what with hospital appointments etc. Just wanted to say thank you for your advice, have been doing research based on your advice. Take care Tiggi Tiggi Sun, 09 Dec 2012 00:00:00 GMT Hello, Thank you for that advice, will definitely get in touch. Has your husband been diagnosed with urachal cancer? Hope you don't mind me asking, it is just difficult to find someone else in the uk with the same diagnosis as my father. Take care Tiggi Tiggi Sun, 09 Dec 2012 00:00:00 GMT Hi Tiggi It's worth getting in touch with Dr. karol.sikora .  He was the only person who gave us any hope and had ideas for treatment when my husband Geoff was diagnosed.Inez Tel: 0207 518 0780 Fax: 0207 518 0781 Email:karol.sikora @cancerpartnersuk.org 21 Barrett St, London W1U 1BD. Geoffrey_Paul Thu, 06 Dec 2012 00:00:00 GMT On Dec 04, 2012 4:43 AM vtoole wrote: On Dec 03, 2012 10:22 AM MarkVMueller wrote: On Dec 02, 2012 11:01 PM Tiggi wrote: Hello, Sorry to interrupt on this discussion, but my father is 65 and was diagnosed in sept with urachal carcinoma, this has spread to hi kidney, spine and lungs. We have been told that it isn't curable, however he has undergone 3cycles of chemo using 5fu and oxidation with no improvement and so he is about to start a new chemo of taxol/carbo. Would be interested to hear if you have any advice on this rare cancer and indeed chemo in terms of side effects. We are based in the UK and our hospital hasn't dealt with this type before. Many thanksHi Tiggi Sorry to hear about your father. Do not despair, nothing is not curable at the same time it is better to be realistic about possible options. I have been fighting this cancer since 4 years now, it has also metastased into my spine and lungs, not kidney but pancreas. (Just read my past messages and you will get a good overview of my story and treatments). Radiation on the spine is generally possible, but they would probably first have to stabilize the spine bones first by filling it with cement (I also had that operation). In the end, with multiple metasases sites operations and radiations become less of an option, docs will generally hesistate to start operating except if their is an immediate threat to the well-being or severe pains. Chemo is the way to go here, I would concede to that being a patient myself. I have just finished 6 cycles of taxol/paraplatin (carbo) with the addition of bevacizumab (avastin). Side effects have been few and bearable - life quality despite the chemo was ok. Good news after 6 cycles - all metas/nodules have become smaller and no new ones appeared. So, your father's doctors surely have not made a completely wrong analysis/strategy with taxol and carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You " target="_blank" rel="nofollow">carbo.You may consider asking the doctors about the addition of bevacizumab (avastin), which is a special blocker not a chemo. It is a rather expensive drug and results depend highly on each patience, but according to my oncologists they have seen fantastic results with it. I have now stopped taxol/carbo and will just continue with bevacizumab (avastin), since this has no real side effects. The regimen proposed by MD Anderson/Siefker-Radkte according to my oncologists is a very very heavy regimen. Siefer-Radkte just published a new paper on her experiences with urachal cancer: http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ "" target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ "" target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ "" target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ "" target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ "" target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ "" 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rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ If you would like to have more detailed information just mail me. All the best to your father. Mark @Mark I am curious as to the article you provided the link to by Siefert-Radkte. I read the accessible part but was unable to access the entire article though I did register. Is there some way to access the entire report? My husband is being treated for this rare cancer who is in the same practice as Dr. Seifert-Radkte at MD Anderson and the regimen is grueling. In the article, I am not sure if she is saying anything different in the passage I was able to access than she has published previously. The chemo regimen at MDA is grueling. Our understanding was that the chemo regimen might provide a 6-12 month remission, at which time my husband would have to undergo the same treatment again to gain another 6-12 month remission. However, our doctor added an experimental drug to the "Seifer-Radkte regimen" as after 2 rounds of the chemo he did not see the improvement he hoped for. It was the addition of Vectibix (also a very expensive drug with results highly dependent on each patient) that began to make the difference in his cancer. He was finally given a reprieve from the monthly Vectibix treatments that were given every 3 weeks after 2 years. Now, we are looking at 2 nodes in the lungs that seem to have appeared about 8 months ago and have increased slightly in size since that time. I am worried about what we can do next with the possibility of metas to the lungs. Any ideas? Thanks, VivianHi Vivian Every patient is of course different and with this rare cancer there is just no way without extensive clinical trials etc. that a "standard" cure/treatment as such can be found (this in essence is also what Dr. Seifert-Radkte closes her new report with. It is my understanding from my oncologists, that me having now undergone a chemo regimen it would depend on the timespan for metas to grow again as to which regimen to use "again". If the re-occurence are within 6-12 month he would suggest going for another regimen (FOLFIRI), if the timespan would be longer we probably would try taxol/carbo again. The one thing I do know is that the regimen I just had worked in the sense that my status has stabilized and many nodules gotten smaller, no new ones and no definite growth, this after the cancer did start to spread all over the place by the end of last year and up to the middle of this year. Thankfully as in your husband's case they seem to at least grow fairly slow. Of course the next few weeks and month will have to show if the cancer further receeds - I currently am on a maintenance regimen with Avastin only. Taxol/Carbo with Avastin was "choosen" by Prof. Knuth, Head of Oncology of the University Hospital of Zurich, a med with an impressive cv and renowned reputation in the cancer world/research. He was "almost certain" that Taxol was the right way to go.  I still had his decision verified by two other oncologists, by the one who manages my case which is my doc of trust and another leading swiss oncologist at the Hirslanden Clinic of Zurich. The regimen itself was very bearable, despite the fact that I got the max dosis according to my body weight etc. Blood values only dropped slightly, there was some burning in the stomach for some days, a little feelling loss in some toes and lower back pains..but...of the 3 weeks between the cycles I worked for 2 weeks. It normally took me about 1 week to get back to "normal". My oncologists stresses the fact that CTs and nodule size is not the only factor to diagnos the state of a patient. His overall clinical health, energy and "appearance" is as important. I am not the scientists or oncology expert, but if nodes grow back the chemo is obviously not fully working and maybe it is time to change tactics. I did have a metastases on my right upper lung flap (about 2.5cm) and another between the lungs (mediastinum) of about 4 cm. Both of these were first radiated with the TrueBeam and then operated beginning of last year. Then, beginning of this year nodules started to grow again in my lung up to ca. 1.3cm but have now been stable since I started the chemo. If I can help you with any more details please contact me or if maybe your docs would like a contact with my doc. I help were I can. All the best to your husband and yourself. Mark MarkVMueller Tue, 04 Dec 2012 00:00:00 GMT On Dec 03, 2012 10:22 AM MarkVMueller wrote: On Dec 02, 2012 11:01 PM Tiggi wrote: Hello, Sorry to interrupt on this discussion, but my father is 65 and was diagnosed in sept with urachal carcinoma, this has spread to hi kidney, spine and lungs. We have been told that it isn't curable, however he has undergone 3cycles of chemo using 5fu and oxidation with no improvement and so he is about to start a new chemo of taxol/carbo. Would be interested to hear if you have any advice on this rare cancer and indeed chemo in terms of side effects. We are based in the UK and our hospital hasn't dealt with this type before. Many thanksHi Tiggi Sorry to hear about your father. Do not despair, nothing is not curable at the same time it is better to be realistic about possible options. I have been fighting this cancer since 4 years now, it has also metastased into my spine and lungs, not kidney but pancreas. (Just read my past messages and you will get a good overview of my story and treatments). Radiation on the spine is generally possible, but they would probably first have to stabilize the spine bones first by filling it with cement (I also had that operation). In the end, with multiple metasases sites operations and radiations become less of an option, docs will generally hesistate to start operating except if their is an immediate threat to the well-being or severe pains. Chemo is the way to go here, I would concede to that being a patient myself. I have just finished 6 cycles of taxol/paraplatin (carbo) with the addition of bevacizumab (avastin). Side effects have been few and bearable - life quality despite the chemo was ok. Good news after 6 cycles - all metas/nodules have become smaller and no new ones appeared. So, your father's doctors surely have not made a completely wrong analysis/strategy with taxol and carbo.You "" target="_blank" rel="nofollow">http://carbo.You " target="_blank" rel="nofollow">carbo.You may consider asking the doctors about the addition of bevacizumab (avastin), which is a special blocker not a chemo. It is a rather expensive drug and results depend highly on each patience, but according to my oncologists they have seen fantastic results with it. I have now stopped taxol/carbo and will just continue with bevacizumab (avastin), since this has no real side effects. The regimen proposed by MD Anderson/Siefker-Radkte according to my oncologists is a very very heavy regimen. Siefer-Radkte just published a new paper on her experiences with urachal cancer: http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ abstract."" target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ target="_blank" rel="nofollow">http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ If you would like to have more detailed information just mail me. All the best to your father. Mark @Mark I am curious as to the article you provided the link to by Siefert-Radkte. I read the accessible part but was unable to access the entire article though I did register. Is there some way to access the entire report? My husband is being treated for this rare cancer who is in the same practice as Dr. Seifert-Radkte at MD Anderson and the regimen is grueling. In the article, I am not sure if she is saying anything different in the passage I was able to access than she has published previously. The chemo regimen at MDA is grueling. Our understanding was that the chemo regimen might provide a 6-12 month remission, at which time my husband would have to undergo the same treatment again to gain another 6-12 month remission. However, our doctor added an experimental drug to the "Seifer-Radkte regimen" as after 2 rounds of the chemo he did not see the improvement he hoped for. It was the addition of Vectibix (also a very expensive drug with results highly dependent on each patient) that began to make the difference in his cancer. He was finally given a reprieve from the monthly Vectibix treatments that were given every 3 weeks after 2 years. Now, we are looking at 2 nodes in the lungs that seem to have appeared about 8 months ago and have increased slightly in size since that time. I am worried about what we can do next with the possibility of metas to the lungs. Any ideas? Thanks, Vivian vtoole Tue, 04 Dec 2012 00:00:00 GMT On Jun 27, 2012 8:24 AM mos1502 wrote: On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.Hi KMKontario, Your story is so similar to my own I was first diagnosed in 2009 and had a partial cystectomy also with clear margins, my belly button was then removed 3 months later as a precaution but it was all clear. I wad having check Ups every 3 months then in the November of 2010 I was diagnosed with Mets to both my lungs so I commenced my chemo journey. It was also noted that I had growths on each ovary, they left them alone and kept an eye on them over time it was noted that the one on the left was starting to wrap itself around the tube from my kidney to my bladder so they decided to operate. So after 19 cycles of chemo I asked for a bit of a break as the mets on my lungs have been stable for a while, which my oncologist was happy enough with.  As I am writing this I am at home recovering from my operation 11 days ago where they removed my ovaries and most of my uterus. I am doing really well and the gyno-ocologist is very happy with the outcome and we are just waiting for the results in the next couple of weeks, before I start back on my chemo. I hope this helps and best of luck with everything. Take careAn update, I just realized it has been a while since my last post. At the end of June I began having very bad pain in my left side.  I went to the ER and they found that the tumor on my ovary had grown from 8cm to 25cm in a matter of weeks.  The pain was from it pressing on my bowels.  I was transferred to hospital in Ottawa where I had surgery to remove the mass.  The wonderful surgeon took both my ovaries and tubes in the process.  The mass was the size of a football.  My recovery was easy and I was up and about in no time. In August I started having pain in my left shoulder.  They did a bone scan and found it to be mets.  I did 3 rounds of radiation and while there is still some occaisional pain, it is much better.   My last chest x-ray two weeks ago showed that the mets in my lungs have grown some.  My Doctor wants to start chemo, but I have asked to wait until after the Holidays and he was fine with that.  I have also been having some pain behind my right knee and they are doing scans to find out what is going on there. Overall I am feeling great.  People are shocked to hear that I am fighting this battle when I tell them.  I have to remain strong for my family and will fight this with every thing I have! KMKontario Mon, 03 Dec 2012 00:00:00 GMT On Dec 03, 2012 3:08 AM vtoole wrote: On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.@KMK Are you being treated at MD Anderson in Houston? No, I am in Canada.  Being treated at the Ottawa Cancer Center. KMKontario Mon, 03 Dec 2012 00:00:00 GMT On Dec 02, 2012 11:01 PM Tiggi wrote: Hello, Sorry to interrupt on this discussion, but my father is 65 and was diagnosed in sept with urachal carcinoma, this has spread to hi kidney, spine and lungs. We have been told that it isn't curable, however he has undergone 3cycles of chemo using 5fu and oxidation with no improvement and so he is about to start a new chemo of taxol/carbo. Would be interested to hear if you have any advice on this rare cancer and indeed chemo in terms of side effects. We are based in the UK and our hospital hasn't dealt with this type before. Many thanksHi Tiggi Sorry to hear about your father. Do not despair, nothing is not curable at the same time it is better to be realistic about possible options. I have been fighting this cancer since 4 years now, it has also metastased into my spine and lungs, not kidney but pancreas. (Just read my past messages and you will get a good overview of my story and treatments). Radiation on the spine is generally possible, but they would probably first have to stabilize the spine bones first by filling it with cement (I also had that operation). In the end, with multiple metasases sites operations and radiations become less of an option, docs will generally hesistate to start operating except if their is an immediate threat to the well-being or severe pains. Chemo is the way to go here, I would concede to that being a patient myself. I have just finished 6 cycles of taxol/paraplatin (carbo) with the addition of bevacizumab (avastin). Side effects have been few and bearable - life quality despite the chemo was ok. Good news after 6 cycles - all metas/nodules have become smaller and no new ones appeared. So, your father's doctors surely have not made a completely wrong analysis/strategy with taxol and carbo.You may consider asking the doctors about the addition of bevacizumab (avastin), which is a special blocker not a chemo. It is a rather expensive drug and results depend highly on each patience, but according to my oncologists they have seen fantastic results with it. I have now stopped taxol/carbo and will just continue with bevacizumab (avastin), since this has no real side effects. The regimen proposed by MD Anderson/Siefker-Radkte according to my oncologists is a very very heavy regimen. Siefer-Radkte just published a new paper on her experiences with urachal cancer: http://www.seminoncol.org/article/S0093-7754%2812%2900160-1/ If you would like to have more detailed information just mail me. All the best to your father. Mark MarkVMueller Mon, 03 Dec 2012 00:00:00 GMT On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.@KMK Are you being treated at MD Anderson in Houston? vtoole Mon, 03 Dec 2012 00:00:00 GMT On Dec 02, 2012 11:01 PM Tiggi wrote: Hello, Sorry to interrupt on this discussion, but my father is 65 and was diagnosed in sept with urachal carcinoma, this has spread to hi kidney, spine and lungs. We have been told that it isn't curable, however he has undergone 3cycles of chemo using 5fu and oxidation with no improvement and so he is about to start a new chemo of taxol/carbo. Would be interested to hear if you have any advice on this rare cancer and indeed chemo in terms of side effects. We are based in the UK and our hospital hasn't dealt with this type before. Many thanks@Tiggi...Sorry to hear of your dad's diagnosis. But, please do not worry about the partial cystectomy. The bladder has the unique and wonderful quality of "stretching" itself. My husband had 1/2 of his bladder removed at 59 (he is now 61 1/2) and has not once since then had any troubles. THe surgeon actually encouraged him to try to withold using the loo for periods of time in an effort to stretch the bladder. It appears this worked as he has never once had any incontinence or urgency.He was orignally diagnosed 3 years ago this month and with the extremely poor prognosis for this cancer (1-2 years) we feel we have been blessed. He had the God awful chemo for 6 cycles (once every 6 weeks) that Dr. Seifert Radke at MD Anderson has "discovered" and they added an experimental drug (Vectibix) to the mix after 2 rounds. All the nodules in his omentum began to "retreat" after 6 months of chemo and 2 years of continued Vectibix treatemnts. He has been treated at MD Anderson in Houston. He was recently taken off of the 2 year trial of Vectibix (FDA approved for colon cancer but not any other cancer thus far) and has been back for 1 CT scans since then. He also goes 1x every 4 weeks for a CA125 (blood tumor marker test) blood draw; this was highly elevated when he was in the throes of the cancer diagnosis and it came down on a regular basis from the inception of the treatments until they were in the low normal range. Unfortunately, they have noted a couple of nodules in the right lung and aclectia (partial collapsed lung) in the other lung. Instead of being able to wait 6 months for pelvic and thorax CT scans, he is now going back in 3 months for thorax CT. I am a bit distressed that one of the two nodes has grown from 1 - 4cm in 6 months. However, his doctor does not wish to do any biopsies and possibly create worse problems at this point. He is putting us in a wait and see mode and that worries me greatly. (He does not appear to have any other mets thus far.) Anyone have any suggestions for possible next step? I am worried as to what we are looking at here and why we are waiting? Are there any other treatments that anyone has had that might seem logical to you if you have undergone similar situation? Thanks,Vivian  vtoole Mon, 03 Dec 2012 00:00:00 GMT Also look on web for Mr Brendan Moran, Pelican Cancer Centre, Basingstoke, United Kingdom I think he is familiar with Dr Sugarbaker techniques Steve S. Abovegrass Mon, 03 Dec 2012 00:00:00 GMT @Tiggi Sorry to hear of your Fathers diagnosis, This surely is a difficult cancer to treat, There is a fair amount of info available on the web..... It seems to me That a Dr Siefker Radtke ( MD Anderson Hospital, Houston, Texas, USA) has data on different chemo trials under way, Also from my own experience A debulking surgery (search web for HIPEC or shake n bake surgery.... Dr Paul Sugarbaker)  is an option if your father is strong enough for Major surgery, Also some people have benefited from Radiation therapy (Truebeam or IG-IMRT ) As far as side effects go it would depend upon both the Chemo he will receive and your fathers current state of health, There are good doctors out there some who will specialise in this type of disease and will be willing to do the legwork needed to get your dad the care that works best for him, Become wise & your own advocate , remember the more you learn the better decisions you will make . Remember many of the patients on this web site have been getting treatment for years and there are some very uplifting stories posted here and other web sites . Stay strong ... Steve S. Abovegrass Mon, 03 Dec 2012 00:00:00 GMT Hello, Sorry to interrupt on this discussion, but my father is 65 and was diagnosed in sept with urachal carcinoma, this has spread to hi kidney, spine and lungs. We have been told that it isn't curable, however he has undergone 3cycles of chemo using 5fu and oxidation with no improvement and so he is about to start a new chemo of taxol/carbo. Would be interested to hear if you have any advice on this rare cancer and indeed chemo in terms of side effects. We are based in the UK and our hospital hasn't dealt with this type before. Many thanks Tiggi Sun, 02 Dec 2012 00:00:00 GMT So happy to hear more good news, Mark.  You have been through the ringer and I have been praying for you. My hubby is doing well since chemo.  We had a scare after a ct in Aug that showed what they thought were mets in his lungs.  They turned out to be sarcoid.  In addition to this rare cancer, the freak of nature I married has a rare auto immune disease that flared up after chemo. His recent CT showed no growth of any of those nodules so we think he is clear for now. We are living and enjoying life.  May you be blessed with the same. BetsyM Tue, 27 Nov 2012 00:00:00 GMT Mark, You are an inspiration! So glad to hear of the battles you are winning. Keep up the good work! Phil PS my ct scans and cystoscopies have been negative since the end of my chemo in June! PhilA Tue, 27 Nov 2012 00:00:00 GMT @ Mark Super to hear you still have a good  attitude !! and of course great results from the treatments,  Your Docs are throwing all available resources with some sucess, and setting a new standard for those who come after, This past year the only treatment I received was the IG-IMRT 6 months ago, I await my contrast & scan results in early January 2013 , Untill then Good luck moving forward . Steve Abovegrass Tue, 27 Nov 2012 00:00:00 GMT Hello Fellows After 6 cycles of chemo it was finally the showdown last week with a contrast CT and evaluation with my oncologist. No new metas and all other previous metas are getting smaller!  Great news, I know that I have not yet won the war but certainly winning mayor battles. I am stopping the chemo and will now continue with a maintenance theraphy consisting of avastin and xgeva, both of which I should not have any burdening side effects from. After 4 years now living with urachal cancer, after 8 mayor operation, after 4 long radiation treatments, two chemo regimens I can now say that my outlook has never been better. Keep on fighting, don't give up, smile when pain and dispair is at its worst. Take care. Mark MarkVMueller Mon, 26 Nov 2012 00:00:00 GMT Yee Ha, Mark. I love good news like this.  Stay strong brother.  Thoughts and prayers are with you. BetsyM Tue, 23 Oct 2012 00:00:00 GMT Hello Fellow Travellers & Hi BetsyM Promised you an update, and here it is, fortunately not bad news and if I go with my optimism, actually good news. Had a "normal contrast" CT done of my upper and lower torso, and because of some breathing issues after physical strain and a suspected possible lung-embolism (geeeez!) I had another CT optimized for great lung detail done today just on the lung. I am happy to say that my clinical status seems to be stable; no further or grown nodules on the lung, metas on the pancrease same size, meta in the liver grown <25% which is within the tolerance margin of a CT. My general therapeutical status is good, if feel fine (except the side effects of the chemo), have no pains or other problems. My oncologist and I decided to go on with the regimen (Taxol, Paraplatin and Avastin/Bevacizumab) for another 3 cyrcles and then check again with CTs. Concerning the lung-embolism there was one single slight indication for it at a remote part of the lung, but out of precaution because I may have had an embolism some month/weeks ago, I will now have to inject a blood-thinner daily. While it is now too early to clearly say the chemo is a "full" success signs do point towards at least "stabilizing" effect, which considering what we are fighting against and the poor prognosis/past experience with chemo, I am cautiously optmistic and hope for similiar or even better status with my next CT end of november/beginning of december after the new 3 cyrcles (got my 4th one yesterday). As I mentioned before, I personally do not have to much strong sideeffects, it takes me about 5-7 days to shake them off; hot head from the cortison, rollercoaster stomach and some burning in stomach (no throwing up) and fatigue. After that I feel fine enough for the next two weeks - apart from an underlying slight fatigue feeling. So, will keep you posted and hope your keeping up too :-) Cheers, Mark MarkVMueller Thu, 20 Sep 2012 00:00:00 GMT Mark, so glad to hear from you!  You are clearly a "work-in-progress!" :)  You are also obviously very strong.  I'm glad they are keeping your disease at bay.  My hubby, Jim, got a CT that showed mediastinal and hilar lymphadenopathy and tons of nodules in his lungs.  We prepared for the worst - that it was aggressively spreading and just found out that the lymph nodes were sarcoid!  This crazy auto-immune-like disease is the only other thing that can look like that on a CT.  We knew it could be sarcoid, but that the chances were very slim.  Boy, were we happy.  He's not out of the woods, as it may be that the sarcoidosis flared up in response to cancer in the lungs, and since we can not biopsy every nodule, we're back to a wait-and-watch approach.  He'll get scanned again first week of Nov. Hang in there Mark. You have been such an inspiration to others fighting this rare beast and I look forward to hearing that your new chemo regimens are shrinking those mets! BetsyM Tue, 11 Sep 2012 00:00:00 GMT On Sep 05, 2012 11:11 AM vtoole wrote: Mark,  How long ago were you diagnosed? Where are you getting your treatments? The protocol you are having is unknown to me, but I'd like to know more. Thanks, VivianHi Vivian If you go back in this thread you will come to more posts of mine and more detailed infos. I also started a thread with some more infos here: http://www.cancercompass.com/message-board/message/all,53264 You can of course also mail me and I'll be happy to provide you with any info I can. Take care, Mark MarkVMueller Thu, 06 Sep 2012 00:00:00 GMT Mark,  How long ago were you diagnosed? Where are you getting your treatments? The protocol you are having is unknown to me, but I'd like to know more. Thanks, Vivian vtoole Wed, 05 Sep 2012 00:00:00 GMT Hello Fellows Been quiet for a while. Lots has happened since, I will have a CT mid month to clarify my state by which time I will inform in more details about how I have been and what next. I am on the third cycle of taxol/paraplatin and bevacizumab (avastin) with fairly low side effects the first few days after getting the regimen. I otherwise feel real good, despite metas I had appearing these past months in spine, liver, pancreas and mediastinum (between lung). A meta on top of my head (in the skin) with a diameter of 3cm and 1cm high has started to die off/dry out since the start of the chemo - so that is a positive development. I will now see mid month if hopefully other metas have shrunk or at least have not grown....will write again soon. Cheers, Mark MarkVMueller Wed, 05 Sep 2012 00:00:00 GMT Hoping that all are having brighter days. God bless.... MC2012 Tue, 10 Jul 2012 00:00:00 GMT Hoping that all are having brighter days. God bless.... MC2012 Tue, 10 Jul 2012 00:00:00 GMT On Jun 27, 2012 8:24 AM mos1502 wrote: On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.Hi KMKontario, Your story is so similar to my own I was first diagnosed in 2009 and had a partial cystectomy also with clear margins, my belly button was then removed 3 months later as a precaution but it was all clear. I wad having check Ups every 3 months then in the November of 2010 I was diagnosed with Mets to both my lungs so I commenced my chemo journey. It was also noted that I had growths on each ovary, they left them alone and kept an eye on them over time it was noted that the one on the left was starting to wrap itself around the tube from my kidney to my bladder so they decided to operate. So after 19 cycles of chemo I asked for a bit of a break as the mets on my lungs have been stable for a while, which my oncologist was happy enough with.  As I am writing this I am at home recovering from my operation 11 days ago where they removed my ovaries and most of my uterus. I am doing really well and the gyno-ocologist is very happy with the outcome and we are just waiting for the results in the next couple of weeks, before I start back on my chemo. I hope this helps and best of luck with everything. Take caremos1502: It is almost scary how our symptoms are mirroring each others.  I am just home from emergencey surgery last week to have both ovaries and tubes removed.  The tumor grew at an obscene rate and last Saturday I was admitted to hospital with very bad pain in my left lower abdonen.  A CT revealed that the tumor had grown from 3cm to 25cm in 3 weeks.  I was transferred to a larger hospital where a gyno-oncologist removed the mass.  She feels it was a compltete success.  There was no attachement other then my ovary, although my bowels were very involved and that is why I was in such pain. After some recovery time I guess it is back to chemo for me as well.  I am not looking forward to it, but we have to fight the fight. I wish you well. KMKontario Tue, 03 Jul 2012 00:00:00 GMT Her PET scan results came back the same. Were keeping our faith that the Lord will continue to give her the strength she needs to overcome this battle. Even though the results were not what we expected,were thankful that it has not spread. To every negative we must find the positive in it. Her oncologist will begin a new treatment of chemo that she will take orally. It's been a rough journey on her,as you all can relate to. MC2012 Fri, 29 Jun 2012 00:00:00 GMT @ MC2012 I hope things go well for your Aunt , it is a serious disease and the road is sometimes tough , I wish her well, @ vtoole IG-IMRT is targeted radiation aka Truebeam , Cyberknife etc.. and in my case can be aimed at specific mets and has show good results on some patients, under the right conditions !. I have been treated in Wash DC. ( HIPEC surgery) and am monitored ( scans etc....at Mass General Hosp , and UMass Medical Ctr, ( IG-IMRT Radiation ), My Dr's tell me I am lucky so far, the disease seems to be in retreat and has so far been contained to the abdomen & pelvic region , I am living and working as normal as my peers !!! ( "What a drag it is gettin old " ) Mick Jagger once pined !!! Abovegrass Fri, 29 Jun 2012 00:00:00 GMT On Jun 28, 2012 2:29 AM Abovegrass wrote: @ vtoole Your story is quite remarkable , and is interesting to me I have just completed 28 days of IG-IMRT and will not get the results for another month or so , But the Dr seems to be optimistic as my tumor is at present around 4 cms. But I am looking for a chemo option to present to my docs ( who coincidently has worked with Dr Radtke in the past  ) So it seems there are many experiments that warrant further investigation, We are all fortunate to be on the frontier so to speak , Pallative care is for some...... better than no careWhere are you being treated? vtoole Thu, 28 Jun 2012 00:00:00 GMT On Jun 27, 2012 3:40 AM MC2012 wrote: Tomorrow my aunt goes to get her Pet Scan results after 6 treatments of chemo. From my understanding this is when she will find out if the combination of chemo will show positive results. If y'all could just say an extra prayer tonight for my aunt,our family will be grateful.Thanks "" target="_blank" rel="nofollow">http://grateful.Thanks " target="_blank" rel="nofollow">grateful.Thanks again....Hoping your aunt's results were good news. vtoole Thu, 28 Jun 2012 00:00:00 GMT On Jun 28, 2012 2:29 AM Abovegrass wrote: @ vtoole Your story is quite remarkable , and is interesting to me I have just completed 28 days of IG-IMRT and will not get the results for another month or so , But the Dr seems to be optimistic as my tumor is at present around 4 cms. But I am looking for a chemo option to present to my docs ( who coincidently has worked with Dr Radtke in the past  ) So it seems there are many experiments that warrant further investigation, We are all fortunate to be on the frontier so to speak , Pallative care is for some...... better than no careHello, The chemo protocol is the one Dr. Ratke discovered, so to speak. I mentioned the 4 meds in the previous post. Perhaps, you could present those to your doc. Do you mind telling me what IG-IMRT is? My husband will be taken off of the "experimental drug" this September after 2 years of every 3 week infusions for a "chemo holiday." My concern is what happens if the cancer comes back? Do we go back to square 1? Do we try another option? I wish you prayers and luck on the results. vtoole Thu, 28 Jun 2012 00:00:00 GMT @ vtoole Your story is quite remarkable , and is interesting to me I have just completed 28 days of IG-IMRT and will not get the results for another month or so , But the Dr seems to be optimistic as my tumor is at present around 4 cms. But I am looking for a chemo option to present to my docs ( who coincidently has worked with Dr Radtke in the past  ) So it seems there are many experiments that warrant further investigation, We are all fortunate to be on the frontier so to speak , Pallative care is for some...... better than no care Abovegrass Thu, 28 Jun 2012 00:00:00 GMT On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.Hi KMKontario, Your story is so similar to my own I was first diagnosed in 2009 and had a partial cystectomy also with clear margins, my belly button was then removed 3 months later as a precaution but it was all clear. I wad having check Ups every 3 months then in the November of 2010 I was diagnosed with Mets to both my lungs so I commenced my chemo journey. It was also noted that I had growths on each ovary, they left them alone and kept an eye on them over time it was noted that the one on the left was starting to wrap itself around the tube from my kidney to my bladder so they decided to operate. So after 19 cycles of chemo I asked for a bit of a break as the mets on my lungs have been stable for a while, which my oncologist was happy enough with.  As I am writing this I am at home recovering from my operation 11 days ago where they removed my ovaries and most of my uterus. I am doing really well and the gyno-ocologist is very happy with the outcome and we are just waiting for the results in the next couple of weeks, before I start back on my chemo. I hope this helps and best of luck with everything. Take care mos1502 Wed, 27 Jun 2012 00:00:00 GMT On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.Hi KMKontario, Your story is so similar to my own I was first diagnosed in 2009 and had a partial cystectomy also with clear margins, my belly button was then removed 3 months later as a precaution but it was all clear. I wad having check Ups every 3 months then in the November of 2010 I was diagnosed with Mets to both my lungs so I commenced my chemo journey. It was also noted that I had growths on each ovary, they left them alone and kept an eye on them over time it was noted that the one on the left was starting to wrap itself around the tube from my kidney to my bladder so they decided to operate. So after 19 cycles of chemo I asked for a bit of a break as the mets on my lungs have been stable for a while, which my oncologist was happy enough with.  As I am writing this I am at home recovering from my operation 11 days ago where they removed my ovaries and most of my uterus. I am doing really well and the gyno-ocologist is very happy with the outcome and we are just waiting for the results in the next couple of weeks, before I start back on my chemo. I hope this helps and best of luck with everything. Take care mos1502 Wed, 27 Jun 2012 00:00:00 GMT Tomorrow my aunt goes to get her Pet Scan results after 6 treatments of chemo. From my understanding this is when she will find out if the combination of chemo will show positive results. If y'all could just say an extra prayer tonight for my aunt,our family will be grateful.Thanks again.... MC2012 Wed, 27 Jun 2012 00:00:00 GMT Are you speaking of CA 125? If so, it is normal as long as it is lower than 35 or 40. vtoole Tue, 26 Jun 2012 00:00:00 GMT My husband was diagnosed with urachal adenocarcinoma 2 1/2 years ago at the age of 58. It was basically Stage 4. We went to a Dallas urological oncologist - who was a surgeon - on the advice of my husband's long time internist in Dallas. We were in such a state of shock and had no idea what the right thing to do was, so we simply followed his advice. My husband went in for multiple MRI's CT scans, etc. and it was decided that he should have a partial cystectomy with a resection. My husband did well after surgery - for a few months  - and was back at work after a couple of weeks; but we then began to notice an enlarging of his stomache for no apparent reason (his surgery was in January and the physical changes began in May - so 4 months). We kept returning to the surgeon and asked what could be happening. He "poo - pooed" us saying it was "post surgical changes." I had done exhaustive research online for this type of cancer and suggested the cancer had metastasized. I asked the doctor about the possibility of follow up chemo as indicated by MD Anderson trials in Houston. Again we felt "poo-pooed" and were told by this doctor, "Chemo doesn't work for this type of cancer and is brutal." We made contact with MDA and eventually my husband agreed to see the MDA's doctor in July - we waited 2 months too long, in my opinioin. Long story short, MDA told us that it appeared that my husband's disease had progressed and that we needed to consider systemic therapy which Dr. Rathke Seifert of MDA had "discovered" as the only possible chemo treatment at this point. Our doctor at MDA, a partner with Dr. Seifert, has been an incredible man and has saved my husband's life. My husband underwent 6 rounds of a grueling chemo regimen - Cisplatin, Gemcidibine, Fluoricil (F5) and Leucovorin - every three weeks that lasted from a Wed through the following Tuesday 24 hours a day round the clock. After two rounds of this grueling treatment, 6 weeks, our doctor did not like the results - no evidence of the cancer receding on the CT scan, so he started my husband on a drug approved by the FDA for colon cancer. (Someone on this message board has already mentioned that this urachal adenocarcinoma cancer cell is very similar to the colon cancer cell). The doctor added this drug, Panumitab, to the next 4 chemo treatments. Although my husband lost 30 pounds during the process of the 4 1/2 months of this grueling treatment, and seemed that he was waning quickly, he had a remarkable response to the addition of this drug, and after the next 3 months, the CT scan showed a recession of the cancer on his peritoneum. (After the surgery, it appeared the cancer had spread to his peritoneum and his lungs.) The doc wanted to continue the chemo therapy for an additional 12 months, however, my husband felt that he would not survive any more of these grueling treatments. So, his doc agreed to simply use the colon cancer drug. He has continued this treatment for the past 1 1/2 years every 3 weeks at MDA. His last CT scan showed no sign of the cancer anywhere. Soon, our doc will give him a "chemo holiday" and will follow him for any signs of cancer recurrence. In the mean time, my husband gained all of his lost weight back, has continued working full time and was able to be at our son's graduation from college this past December. Our lives have returned to a sort of "normal" and it has been a blessing to have found this doctor at MDA. It appears that only 37 - 50% of people survie this cancer for 5 years. Most die within the first 1 - 2 years. Our hope is that this "incurable" cancer will have been somewhat disabled by  a two year course of this colon cancer drug. If anyone is out there who wants hope, this is your hope. My husband was a "goner" according to MDA's doctor 2 1/2 years ago with a wing and a prayer that he might respond and get a 6 month remission/reprieve before the cancer would return. It's been 2 1/2 years and he is alive and living life. vtoole Tue, 26 Jun 2012 00:00:00 GMT Thank you for the prayers. Keep me updated on your mother. I will keep y'all in my prayers. We all know that prayer is powerful! MC2012 Thu, 21 Jun 2012 00:00:00 GMT MC2012 Your Aunt and Family are in my prayers! Thank You for excepting me :) lindsay2 Thu, 21 Jun 2012 00:00:00 GMT My aunt this week had a week off of chemo. Tomorrow she goes for her second Pet scan. I stay as positive as I can as I know the support helps her. Im asking for prayers that her Pet Scan will show improvement. MC2012 Thu, 21 Jun 2012 00:00:00 GMT On Jun 05, 2012 7:25 AM mos1502 wrote: Hi MC2012, When I first started chemo my hair was past my shoulders in length, so when I first noticed that I started losing my hair I decided to get my hair cut short. When I was making the appointment at the hairdressers I explained what was happening and made sure that I got my regular hairdresser and that I was in the salon on my own, so they let me have my appointment at the end of the day when it had closed, which was a great help as it was rather upsetting at the time, but I brought a freind with me which I was grateful for. But although it was upsetting I felt it was something I had control of and it was my decision to lose the hair and not the chemos. So if your aunt can go and get it cut as short as she is willing to go even if it means going to the hairdressers a couple of times, rather than doing it in one sitting, if she feels it would be to upsetting, but I found that once it had started it was a pretty quick process. Has your aunt decided on a whether or not to be fitted with a wig? I went for a fitting about two weeks later, I chose my wig and went to collect it a week later at which point they shaved what hair I had left extremly short, they gave me a number one all around which was rather shocking at the time, but it turned out for the best as it made the hair loss far less noticeable and made I didn't have to worry about it. But I didn't lose it all completely it just thinned more in place generally arond the  back and sides. Even though I got fitted for the wig it was more for wearing when going for a meal or special occasion rather than every day wear, other than that I wore hats and scarves. But never at home, because at the end of the day if I couldn't be my trueself in my own home, where could I? I hope it helps but just having you by herside with your encouragement and support she will be fine and will get through it.Thanks for your kinds words. MC2012 Thu, 21 Jun 2012 00:00:00 GMT I passed on the advice for my aunt to cut her hair short.She went with a very cute style that everybody complemented her on. I must admit the new style made her smile. A few wks later,she decided to shave it all. It made the process a lot easier on her and her kids.For now, she doesn't want a wig. She prefers using scarves. Thanks to all that have been so helpful in offering advice and their stories. God bless MC2012 Thu, 21 Jun 2012 00:00:00 GMT On Jun 13, 2012 1:04 AM KMKontario wrote: I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer.my Aunt had a mass in her ovary. Her GYN-oncologist decided it would be best to do complete hysterectomy. I know that the mass she had on her ovary was large and was giving her discomfort. After hyst, she was referred to oncologist and he is doing her chemo. MC2012 Thu, 21 Jun 2012 00:00:00 GMT Hello all I want you to know I also am a serviver Of Urachel Urachus Adneo Carcinoma. And I also have taken no cemo our anything elce. I am aprox one and a half years out of surgery. Prayers & kangan water is what helps me. I am controlling my PH level with it. It is very important part of staying HELTHY. I also would offer a book called " killing Cansor not people " by Robert G Wright. And " change your water change your life" I hope this is of help to anyone who takes the time to look at what is helping so many. If I can answer any questions let me know. Happy to be HELTHY. Eric. TripleE Tue, 19 Jun 2012 00:00:00 GMT On Jun 05, 2012 3:51 AM MC2012 wrote: Can any one tell me if there's anything you advise to help with hairloss in chemo. My aunt told me she's beginning to lose her hair. I know there's nothing to prevent it but is there anything that has helped slow the process? I've come across some tips online but I know that the best advice comes from here.I cut my hair real short knowing it would fall out, and then felt my head tingle- and it fell out in big clumps...so I took a vacuum cleaner and vacuumed my head, and being evening, I wrapped it in a small towel with a shower cap, the next day I had someone shave the rest...being that it looked ugly all clumpy.  I was bald and beautiful for almost a year- w/IBC, my husband had urachal cancer at the time. Jimnow4 Wed, 13 Jun 2012 00:00:00 GMT I was diagnosed with Urachal Adenocarcinoma in April 2011. In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo. In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary. My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need. I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist. I would welcome any advice from others who are dealing or have delt with this type of cancer. KMKontario Wed, 13 Jun 2012 00:00:00 GMT Hair loss is different with each treatment protocol. I don't remember which drugs your aunt will be taking. I never lost my hair, it just thinned. I was on Folfiri. There are people on Folfiri who did lose their hair. Some people prefer wigs and others find that they are too hot and just use scarves. It really is an individual response. Check and see what she would like to do and realize she might change her mind also... jacid Tue, 05 Jun 2012 00:00:00 GMT Hi MC2012, When I first started chemo my hair was past my shoulders in length, so when I first noticed that I started losing my hair I decided to get my hair cut short. When I was making the appointment at the hairdressers I explained what was happening and made sure that I got my regular hairdresser and that I was in the salon on my own, so they let me have my appointment at the end of the day when it had closed, which was a great help as it was rather upsetting at the time, but I brought a freind with me which I was grateful for. But although it was upsetting I felt it was something I had control of and it was my decision to lose the hair and not the chemos. So if your aunt can go and get it cut as short as she is willing to go even if it means going to the hairdressers a couple of times, rather than doing it in one sitting, if she feels it would be to upsetting, but I found that once it had started it was a pretty quick process. Has your aunt decided on a whether or not to be fitted with a wig? I went for a fitting about two weeks later, I chose my wig and went to collect it a week later at which point they shaved what hair I had left extremly short, they gave me a number one all around which was rather shocking at the time, but it turned out for the best as it made the hair loss far less noticeable and made I didn't have to worry about it. But I didn't lose it all completely it just thinned more in place generally arond the  back and sides. Even though I got fitted for the wig it was more for wearing when going for a meal or special occasion rather than every day wear, other than that I wore hats and scarves. But never at home, because at the end of the day if I couldn't be my trueself in my own home, where could I? I hope it helps but just having you by herside with your encouragement and support she will be fine and will get through it. mos1502 Tue, 05 Jun 2012 00:00:00 GMT Hi MC2012, When I first started chemo my hair was past my shoulders in length, so when I first noticed that I started losing my hair I decided to get my hair cut short. When I was making the appointment at the hairdressers I explained what was happening and made sure that I got my regular hairdresser and that I was in the salon on my own, so they let me have my appointment at the end of the day when it had closed, which was a great help as it was rather upsetting at the time, but I brought a freind with me which I was grateful for. But although it was upsetting I felt it was something I had control of and it was my decision to lose the hair and not the chemos. So if your aunt can go and get it cut as short as she is willing to go even if it means going to the hairdressers a couple of times, rather than doing it in one sitting, if she feels it would be to upsetting, but I found that once it had started it was a pretty quick process. Has your aunt decided on a whether or not to be fitted with a wig? I went for a fitting about two weeks later, I chose my wig and went to collect it a week later at which point they shaved what hair I had left extremly short, they gave me a number one all around which was rather shocking at the time, but it turned out for the best as it made the hair loss far less noticeable and made I didn't have to worry about it. But I didn't lose it all completely it just thinned more in place generally arond the  back and sides. Even though I got fitted for the wig it was more for wearing when going for a meal or special occasion rather than every day wear, other than that I wore hats and scarves. But never at home, because at the end of the day if I couldn't be my trueself in my own home, where could I? I hope it helps but just having you by herside with your encouragement and support she will be fine and will get through it. mos1502 Tue, 05 Jun 2012 00:00:00 GMT Can any one tell me if there's anything you advise to help with hairloss in chemo. My aunt told me she's beginning to lose her hair. I know there's nothing to prevent it but is there anything that has helped slow the process? I've come across some tips online but I know that the best advice comes from here. MC2012 Tue, 05 Jun 2012 00:00:00 GMT Hi Mark, Glad to hear that you have come out the other side of your operation and that you come across so positive you are an inspiration. My operation is scheduled for 15th June so just getting things organised. Keeping fighting and stay positive :D mos1502 Tue, 29 May 2012 00:00:00 GMT Hang in there. Your courage is amazing. I'm waiting for DNA sequencing results that might have recommendations. No chemo for now. jacid Tue, 29 May 2012 00:00:00 GMT On May 05, 2012 11:02 PM mos1502 wrote: On May 05, 2012 10:45 mos1502 wrote: On Apr 27, 2012 4:25 MarkVMueller wrote: On Apr 19, 2012 3:30 AM PhilA wrote: Thinking about you Mark. You are a strong guy.Thank you everbody for the wishes. I will inform you all in more detail in a short while...next step is going in next week for an operation to pump in cement into my two vertebras.Hi Mark, I hope everything went well with your operation thinking of you at this time.The latest with myself is that I have been on a bit of a break from the chemo just to give my body a bit of a break from it, go back for my review ct in the next couple of weeks. But I was in hospital over Easter and they did a ct scan and they have now informed me that a cyst that I have had on my ovary for over a year is now a cancerous turmour which is now started wrapping itself around the tube that goes from my kidney to my bladder, hence the reason they now think that its cancer rather than just a normal cyst. They had to decide whether or not to go in and attempt to take it out as they say it will be a very complicated surgery and they don't want to make me sicker from the operation as they said that it can go a number of ways in that they go in and its straight forward or they go in and decide then that there is nothing they can do and close me back up again or attempt to take it out damage the tube in the process and I end up losing my kidney. So a big undertaking but they have decided to operate and now I'm just waiting to hear when as they are trying to coordinate two surgeons from two different hospitals to do the operation, but hopefully it will be sooner rather than later. The tumours on my lungs have been stable up until my last ct scan which is good news, which as my doc calls it winning the battle in my lungs but losing the war below as my chemo hasn't had any effect on the ovarian tumour. So a battle ahead but one in which I will fight as none of us shall give up without a fight.All the best with your operation mos, thinking of you! MarkVMueller Tue, 29 May 2012 00:00:00 GMT Dear Fellow Travellers It has been a while since I last posted and told you about my status. Well, about 3 weeks ago I had a vertebroplasty, filling my two affected thoracic vertebras (TH7 + TH9) and to further stabilze also TH8 with cement. The tumor had already infiltrated the spinal marrow and I had considerable pain before the operation. Vertebroplasty is not without risks, there is a slight chance of it shooting into the spinal channel or causing an embolism if it gets into the lung or heart thru spills into the blood system. Of course I had to beat the odds, some of the cement shot into the spinal channel. The surgeons decided immediately to surgicaly remove the cement, which they successfully did. I can still walk, so it all ended well. The cement is pumped in with a heat of 70 degrees celcius, which kills of cancer cells apart from hopefully also having closed in as much of the tumor as possible. The bad news is that I have had lots of problems with my back muscles, pain and stiffness, which is only slightly getting better (probably the source of the pain is my ribs). The good news and great relief is that the severe pain I had in my spine is gone completely. I will now start radiation of TH7 and TH8 by the end of this week, 10 sessions...do not know the total amount of grey yet. So, all in all I feel fine. I am limping because of the left upper legbone implant (op 12 weeks ago) and the back muscles are still not fully loose, but hey, I am walking and talking. Still got some other problem areas; meta in the muscles above thoracic vertebras TH5, metas in the lumbar vertebras (L1 - L3), hip muscles both sides, in tissue above my left collar bone, slight indications in my right femur neck (welcome second implant sometime in the future!). All these occurences are for now being monitored, they are not yet life threatening or causing me pain, all of them could be surgicaly dealt with. Getting Xgeva monthly now and evaluating the chemo options. Will most probably wait until 6 weeks after radiation, get another PET-CT and then decide with the docs on how to continue. The first chemo would probably either be a taxol/paraplatin or maybe FOLFIRI regimen. MarkVMueller Tue, 29 May 2012 00:00:00 GMT Thanks! She's to have her 2nd treatment this week. She had a rough weekend, diagnosed with large kidney stone by ER. Her urol seems to think she doesn't have kidney stone, he states shes having tissue calcification caused by chemo. Has anyone had this? MC2012 Tue, 08 May 2012 00:00:00 GMT My thoughts are with you, hoping that you will win this latest battle.  I am full of admiration for your courage. Geoffrey_Paul Sun, 06 May 2012 00:00:00 GMT On May 05, 2012 10:45 mos1502 wrote: On Apr 27, 2012 4:25 MarkVMueller wrote: On Apr 19, 2012 3:30 AM PhilA wrote: Thinking about you Mark. You are a strong guy.Thank you everbody for the wishes. I will inform you all in more detail in a short while...next step is going in next week for an operation to pump in cement into my two vertebras.Hi Mark, I hope everything went well with your operation thinking of you at this time.The latest with myself is that I have been on a bit of a break from the chemo just to give my body a bit of a break from it, go back for my review ct in the next couple of weeks. But I was in hospital over Easter and they did a ct scan and they have now informed me that a cyst that I have had on my ovary for over a year is now a cancerous turmour which is now started wrapping itself around the tube that goes from my kidney to my bladder, hence the reason they now think that its cancer rather than just a normal cyst. They had to decide whether or not to go in and attempt to take it out as they say it will be a very complicated surgery and they don't want to make me sicker from the operation as they said that it can go a number of ways in that they go in and its straight forward or they go in and decide then that there is nothing they can do and close me back up again or attempt to take it out damage the tube in the process and I end up losing my kidney. So a big undertaking but they have decided to operate and now I'm just waiting to hear when as they are trying to coordinate two surgeons from two different hospitals to do the operation, but hopefully it will be sooner rather than later. The tumours on my lungs have been stable up until my last ct scan which is good news, which as my doc calls it winning the battle in my lungs but losing the war below as my chemo hasn't had any effect on the ovarian tumour. So a battle ahead but one in which I will fight as none of us shall give up without a fight. mos1502 Sat, 05 May 2012 00:00:00 GMT On Apr 27, 2012 4:25 MarkVMueller wrote: On Apr 19, 2012 3:30 AM PhilA wrote: Thinking about you Mark. You are a strong guy.Thank you everbody for the wishes. I will inform you all in more detail in a short while...next step is going in next week for an operation to pump in cement into my two vertebras.Hi Mark, I hope everything went well with your operation thinking of you at this time. mos1502 Sat, 05 May 2012 00:00:00 GMT On May 02, 2012 4:00 MC2012 wrote: Today has been a difficult time for my aunt. Tomorrow she begins Chemo. Please keep her in your prayers.Hi MC2012, I hope your auntie is doing well and isn't finding the chemo to hard to handle. Thinking of her at this time   mos1502 Sat, 05 May 2012 00:00:00 GMT Hang in there Mark.  I hope the cement works and gives you some relief.  BetsyM Fri, 04 May 2012 00:00:00 GMT You got it! BetsyM Fri, 04 May 2012 00:00:00 GMT Today has been a difficult time for my aunt. Tomorrow she begins Chemo. Please keep her in your prayers. MC2012 Wed, 02 May 2012 00:00:00 GMT On Apr 19, 2012 3:30 AM PhilA wrote: Thinking about you Mark. You are a strong guy.Thank you everbody for the wishes. I will inform you all in more detail in a short while...next step is going in next week for an operation to pump in cement into my two vertebras. MarkVMueller Fri, 27 Apr 2012 00:00:00 GMT My aunt received pathology report from her previous surgery. Her GYN/Oncologist has recommended she seek treatment with an oncologist. Can anyone tell me will she ever get a day without worries? I hear so many things about MD Anderson. Has anyone gone there for treatment? MC2012 Fri, 27 Apr 2012 00:00:00 GMT Good news, my uncle got his job back. My aunt is improving day by day. Her faith gives her strength. Keep your faith and stay strong! MC2012 Sat, 21 Apr 2012 00:00:00 GMT Thinking about you Mark. You are a strong guy. PhilA Thu, 19 Apr 2012 00:00:00 GMT Sorry to hear that Mark. Stay positive and keep your faith. I'll keep you in my prayers. MC2012 Thu, 19 Apr 2012 00:00:00 GMT On Apr 18, 2012 8:10 AM MarkVMueller wrote: Bad Monday. I received a bad diagnosis on monday. MRIs have shown tumors in my spine; T7 & T9 (thoracic region) with T9 already showing signs of fissures, in tissues surrounding T5 and structural changes in the bones of L1-L3 (lumber region). There are also signs in the Musculus iliopsoas (hip muscle) on both sides. It is questionable if surgery is an option but I have not yet consulted with a neurosurgeon. I will now look at the radiotheraphy treatment options and will most certainly start chemo (I have gone thru 3 cycles of Cisplatin/Gemzar before). The regimen has not yet been defined - there is talk of FOLFIRI and maybe AVASTIN. I will get second opinions on the regimen in any case. Got to have a port put in as well, no veins left to work with in the arms. I will keep you guys posted. It has been a harsh monday but I will not let this pull me down. Take care fellow travellers. Mark Hi Mark, I'm so sorry to hear about your news. I was diagnosed in April 2010 and I had partial cystectomy and surrounding lymph nodes removed. However, by the time I realized at had urachal cancer ithad already metatastized to my lungs. I went under chemo for two years now. FOLFOX, FOLFIRI,Taxol/Gemzar. Then the lesions in my lungs were gone. However they did show back up within a few months. Now I"m back on FOLFOX & FOLFIRI. I will have scans after 4 regimens and see how that works. I just wonderif I would be a candidate for radiation in my lungs with the true beam technology.  froggin02 Wed, 18 Apr 2012 00:00:00 GMT I too, wish you all the best. I have been following but haven't posted in a long time. I was diagnosed in 2010, and had surgery in the same year when they found I had positive lymph nodes and an abdominal spot as well. 6 months after surgery I had 3 new nodes on and near my bladder. I had 6 cycles of Folfiri which only kept the size of the nodes stable. Now, 4 months after the end of the Folfiri, the main tumor has grown and I have 3 new metastatic nodes. They don't bother me very much and I'm able to still work full-time. My oncologist says there is no reason now to do any more chemo. Studies I have read say its radiation resistant, so I won't do that. I've had biomarkers done and will have a consultation about treatments out there based on DNA results. I'm also getting a second opinion about a second surgery. All things considered, I can't complain. I'm 67 and a nurse, my children are grown, so that is no a worry. Time will tell. I may choose to do nothing at all. jacid Wed, 18 Apr 2012 00:00:00 GMT Mark I wish you lots of strength to continue on .... Remember that previous treatments have worked.... and the new chemo regimen will be another chance to move in the right direction , You are a great inspiration to me , Compared to you so far my treatments are a walk in the park, ( I am currently on day 23 of 28 IG-IMRT "Truebeam" ) . Your doctors are doing all they can and adding options as they are needed. When I was first diagnosed 2005 they told me no treatment was available. Now in 2012 Truebeam is an option , and the many new chemo cocktails !!. So buying time now... is all we need as new options come to the battlefront all the time .   Keep the faith and I wish you the best Steve.   Abovegrass Wed, 18 Apr 2012 00:00:00 GMT Bad Monday. I received a bad diagnosis on monday. MRIs have shown tumors in my spine; T7 & T9 (thoracic region) with T9 already showing signs of fissures, in tissues surrounding T5 and structural changes in the bones of L1-L3 (lumber region). There are also signs in the Musculus iliopsoas (hip muscle) on both sides. It is questionable if surgery is an option but I have not yet consulted with a neurosurgeon. I will now look at the radiotheraphy treatment options and will most certainly start chemo (I have gone thru 3 cycles of Cisplatin/Gemzar before). The regimen has not yet been defined - there is talk of FOLFIRI and maybe AVASTIN. I will get second opinions on the regimen in any case. Got to have a port put in as well, no veins left to work with in the arms. I will keep you guys posted. It has been a harsh monday but I will not let this pull me down. Take care fellow travellers. Mark MarkVMueller Wed, 18 Apr 2012 00:00:00 GMT I'm looking for assistance for my aunt. Hope that someone here can point me in the right direction. My uncle lost his job today, which now means my aunt will lose her insurance and now they will have no income coming in. This is so much for them to be hit with all at once. I don't know if there's any assistance out there for her to continue her treatment. Any suggestions would be greatly appreciated. MC2012 Tue, 17 Apr 2012 00:00:00 GMT Great news for today, she was able to go home. To some they might think that's no big deal but for her to be once again with her husband and kids is a huge blessing! Thanks for asking about her. I will definitely keep you posted on her progress and hope you keep me posted as well. God bless you and your family. MC2012 Thu, 12 Apr 2012 00:00:00 GMT On Apr 11, 2012 2:59 AM MC2012 wrote: Update on my aunt. She's not out of the hospital but she's one step closer. Her recovery maybe slow, but God is with her every step of the way.I'm so happy and you are exactly right that God is with her every step if the way. Always keep your faith and hope because without that it can be very hard. I too have been going through this for two years but everyone is saying how great I'm doing and I know it is because of my faith in God and my wonderful doctor at Emory.  Keep us updated on the next steps.  froggin02 Wed, 11 Apr 2012 00:00:00 GMT Update on my aunt. She's not out of the hospital but she's one step closer. Her recovery maybe slow, but God is with her every step of the way. MC2012 Wed, 11 Apr 2012 00:00:00 GMT I was out in 3 days.. I hope she has a speedy recovery and that she's released when she's ready. PhilA Sun, 08 Apr 2012 00:00:00 GMT When you had surgery, how long did it take for you to recover? At first my aunt was told to expect hospital stay bw 3-4 days.She 's on day 4. Not sure when she can go home but atleast at the hospital she's getting around the clock care she needs. MC2012 Sun, 08 Apr 2012 00:00:00 GMT On Apr 08, 2012 2:53 AM MC2012 wrote: On Apr 05, 2012 3:55 PM PhilA wrote: YES You must see an oncologist who will quarterback treatment. This cancer is tricky and not widely known. It took me weeks to find the right oncologist and organize the right treatment.That's exactly why I was thinking it would be good idea to get oncologist input. I'm not trying to cross any boundaries with her docs but I also want to make sure she gets the best treatment out there available.After her surgery on Tuesday, the plans were to be going home Saturday.Unfort unately,she wasn't ready to go home today. She's doing much better, but not at the point to go home. Asking for prayers. Has anyone had experience with the type of surgery she had? MC2012 Sun, 08 Apr 2012 00:00:00 GMT On Apr 05, 2012 3:55 PM PhilA wrote: YES You must see an oncologist who will quarterback treatment. This cancer is tricky and not widely known. It took me weeks to find the right oncologist and organize the right treatment.That's exactly why I was thinking it would be good idea to get oncologist input. I'm not trying to cross any boundaries with her docs but I also want to make sure she gets the best treatment out there available. MC2012 Sun, 08 Apr 2012 00:00:00 GMT YES You must see an oncologist who will quarterback treatment. This cancer is tricky and not widely known. It took me weeks to find the right oncologist and organize the right treatment. PhilA Thu, 05 Apr 2012 00:00:00 GMT On Mar 27, 2012 3:32 PM MarkVMueller wrote: On Mar 23, 2012 2:46 AM MC2012 wrote: On Feb 28, 2012 7:18 PM MarkVMueller wrote: Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... MarkYour story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!Sorry to hear about your ant MC2012, I wish her and yourself a lot of strength. This place is a good one to get information. Your auntie will first get a scan, the "normal" CT with contrast liquid and PET are good for different things and sometime if it is in the bones or brain a MRI is the choose option. These are the things you will have to have an oncologist you trust discuss with your auntie and I can only suggest second opioned by a different institute/doctor. Cheers, MarkDoes anyone suggest I get her in to see an oncologist in addition to her other specialist. She's currently being treated by urologist and GYN/oncologist. MC2012 Thu, 05 Apr 2012 00:00:00 GMT On Mar 27, 2012 4:37 PM chukman wrote: On Mar 27, 2012 3:32 AM MC2012 wrote: On Feb 12, 2011 1:05 AM mos1502 wrote: On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care xHope that your doing well. If at possible I would like to get feedback from you.Hey Im doing really well.  No reoccurance since my bladder was taken out Feb 28/11.  I didn't need chemo, didn't need radiation and am a pretty rare bird.  By opting to have a radical cysectomy I think it saved my life.  I didn't feel right getting a partial and something inside me kept telling me don't do it and jump in and get the bladder out.  I have had a few issues of infections with my conduit but that is something I can deal with.  There is hope out there...stay positive and keep fighting!!! I wanted to pass on an update since all have been so helpful. My aunt had a complete hysterectomy along with partial cystectomy. She's in a great deal of pain but is recovering well. She will be in hospital for several days and should begin with chemo in 2-3 weeks. MC2012 Thu, 05 Apr 2012 00:00:00 GMT On Mar 27, 2012 3:32 PM MarkVMueller wrote: On Mar 23, 2012 2:46 AM MC2012 wrote: On Feb 28, 2012 7:18 PM MarkVMueller wrote: Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... MarkYour story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!Sorry to hear about your ant MC2012, I wish her and yourself a lot of strength. This place is a good one to get information. Your auntie will first get a scan, the "normal" CT with contrast liquid and PET are good for different things and sometime if it is in the bones or brain a MRI is the choose option. These are the things you will have to have an oncologist you trust discuss with your auntie and I can only suggest second opioned by a different institute/doctor. Cheers, MarkMy aunt had her first surgery. Complete hysterectomy and partial cystectomy. In 2-3 weeks chemo should start. MC2012 Thu, 05 Apr 2012 00:00:00 GMT On Nov 30, 2010 2:20 PM survivor1dallas wrote: I am now in my 5th year since diagnosis.  I am still going through treatments but I am strong, healthy and able to do the treatments.  Blessings and Dr. June Meymand. She specializes in keeping cancer patients biochemically strong and able to continue whatever treatments are necessary. I have exceptional doctors also thanks to Dr. June.  Three years ago a famous hospital in Houston, Tx told me to go home, they had nothing else to offer me.  My son found Dr. June Meymand.  This journey takes many different twists and turns and it is so important to be physically as strong as possible to continue.  This type of cancer is more of a chronic condition with ongoing treatments.  I am staying with Dr. June at the center now getting reading for another type of treatment. I hope this helps.  DM, Dallas, Tx.Hope your doing well. Continue staying positive, you give us hope. My aunt has just been diagnosed and if you would be so kind on giving me feedback,we would be so greatful! MC2012 Fri, 30 Mar 2012 00:00:00 GMT On Jun 08, 2011 9:53 PM SonInNeed wrote: Hi My mother has stage 4 Urachal Cancer and was diagnosed 05/2010. They went ahead and took her whole bladder in August. She went for 2nd surgery today and was told their was nothing they could do due to the tumors being close to blood vessels and they did not want her to bleed to death. The say 2 years at most and me being only 20 and seeing things a little clearer now can not deal with this being an only child and half way through college. More then all she doesn't deserve this being the only person ever there for me in my life more than anything. I have gotten as much reasearch as I could and haven't noticed much about the blood vessel situation so any help please.Hope your mother is doing better. MC2012 Fri, 30 Mar 2012 00:00:00 GMT On Nov 04, 2011 3:08 AM Abovegrass wrote: Hi All Its been some time since I last checked in to this message board , I am well , working full time , and keeping my hopes up ,The U A cancer is monitored , I expect to see surgery again early 2012, small 2.5cms nodules in abdomen with slow growth ( a vast improvement from the 25lb's in 2005 ), My doctors at Massachusetts General Hosp, & Washington Hosp Ctr, do not seem to advocate any chemo or rad , Instead they prefer the HIPEC & Cyto-Reductive methods, It seems to me no other treatment is as effective across the range of patients on this messge Board, I am now almost 6 years since my 1st diagnosis. and consider myself very fortunate to be a Dr Sugarbaker patient. ( 2 surgerys) The possibilty of removal of the tumors in my case through skillfull surgical tactics, brings my condition closer to cancer free each visit to the Operating Room , It is a real challenge to UA Patients & Dr's to select a treatment course whether it be Chemo , Radiation, HIPEC , CRS, and frontier treatments such as microwave, laser & Truebeam technology, or any combination of the above, I draw most strength in the thought that we can buy valuable time by trying to stay positive in the hope that a breakthrough is not in the too distant future "So the road may wind and turn, Who can tell what we may learn, For we have yet to find our way, In search of hope... another day."   Til the next time... Steve S.I'm new at this site but I see where you mentioned HIPEC. Their was someone that posted a comment asking about that. Can you give any feedback? My aunt has just been diagnosed with U A. I'm trying to obtain as much information for her as possible. Your road as been rough but your determination as gotten you this far. Continue staying positive. Prayers going your way for a full recovery! MC2012 Fri, 30 Mar 2012 00:00:00 GMT On Mar 28, 2012 4:24 AM MC2012 wrote: On Mar 27, 2012 9:24 PM Abovegrass wrote: Your aunt is fortunate to have you advocating on her behalf and I wish both of you  well on your quest !!! I have only received cyto reductive surgery ( in 2006 25lb's of tumor was removed in a 14 hr surgery) In Washington Hospital Ctr Maryland ) also received HIPEC.... aka...Heated chemo, applied topically in the op room for 2 hrs , and continued for 4 more days aka "shake & bake" . I received only follow up care for 4 years to monitor for renewed growth. Then in 2010 due to some small recurrence I again received a 12 hr surgery with 2 hrs of HIPEC. In March 2012 I have started to receive IG-IMRT (radiation therapy) To try to shrink a persistent tumor located in a difficult to reach area behind the Stomach. This hopefully will shrink and or destroy the tumor, I only have been monitired by ct with contrast.. as my doctors feel with mucinous tumor PET will reveal little, I am not sure why they feel this way .However I am aware that Urachal Cancer presents differently in some people ,therefore only doctors with some access to study data etc.. can evaluate these kind of situations . There is research available from M D Anderson studies , Dr Arlene Radtke.... WHC Dr Sugarbaker .. This cancer is apparantly more common in Japan and there is exciting research being done there , I have recently found a Dr in Worcester MA. with some experience in HIPEC but only one prior UA patient ,  UA is  rare disease and requires lots of personal digging on the internet to uncover any data or advice and then proceed with caution as there is also some misinformation . If you wish to read more about this case I have provided a link to an article published in 2006 but please be warned it may be a little graphic and really is more usefull to a Dr who is familiar to these types of procedures so if you are squeamish please be forewarned  !!!!!. http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" 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rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 Good luck with your research MC2012      Thank you for responding. Coming across this site has been a blessing! Y'all give so many of us hope. For y'all to have experienced this first hand and then willingly give advice and share your stories is a blessing that I can't thank y'all enough for! My aunt has been scheduled for surgery next week for a complete hysterectomy. They will also be doing surgery on her bladder,but to what degree we are unsure of.She "" target="_blank" rel="nofollow">http://of.She " target="_blank" rel="nofollow">of.She will be given details on that Friday. She has been informed that she will require chemo, but to what type has not been determined yet. I hope that you will keep in touch and I will do the same. I will keep you in my prayers!Hello, I'm new to this website and I too was looking for more information on the rare type of cancer. I was diagnosed in April 2010  at the age of 40 and I was devasted. Since then I have had a partial cystectomy and the urachal remnant and the surrounding lymph nodes. I really hate that in my case it was already in my lungs too when I found out with no warning signs at all. However, I have had almost two years of chemotherapy and I had scans done in March 2011 and there was no evidence of disease. Unfourtantly it has shown back up in my lungs and I have started back on chemo. I have done very well over all and have been very blessed even though chemo is no cake walk it definitely could be worse. I want to tell you to keep your hope alive and I know it may be hard sometimes. I would also love it if someone could share any ideas with me since it is so hard to find answers and for it is can be so scary looking online. Does anyone know if I would be a candidate for HIPEC or any type of radiation. If anyone needs any information regarding my tx. regimen please let me know and I will be happy to share my story as well. I'm currently under care at Emory University Winship Cancer Institute.  Thank you all for this post!! We need all the help we can get. Love to all.  froggin02 Fri, 30 Mar 2012 00:00:00 GMT On Mar 27, 2012 9:24 PM Abovegrass wrote: Your aunt is fortunate to have you advocating on her behalf and I wish both of you  well on your quest !!! I have only received cyto reductive surgery ( in 2006 25lb's of tumor was removed in a 14 hr surgery) In Washington Hospital Ctr Maryland ) also received HIPEC.... aka...Heated chemo, applied topically in the op room for 2 hrs , and continued for 4 more days aka "shake & bake" . I received only follow up care for 4 years to monitor for renewed growth. Then in 2010 due to some small recurrence I again received a 12 hr surgery with 2 hrs of HIPEC. In March 2012 I have started to receive IG-IMRT (radiation therapy) To try to shrink a persistent tumor located in a difficult to reach area behind the Stomach. This hopefully will shrink and or destroy the tumor, I only have been monitired by ct with contrast.. as my doctors feel with mucinous tumor PET will reveal little, I am not sure why they feel this way .However I am aware that Urachal Cancer presents differently in some people ,therefore only doctors with some access to study data etc.. can evaluate these kind of situations . There is research available from M D Anderson studies , Dr Arlene Radtke.... WHC Dr Sugarbaker .. This cancer is apparantly more common in Japan and there is exciting research being done there , I have recently found a Dr in Worcester MA. with some experience in HIPEC but only one prior UA patient ,  UA is  rare disease and requires lots of personal digging on the internet to uncover any data or advice and then proceed with caution as there is also some misinformation . If you wish to read more about this case I have provided a link to an article published in 2006 but please be warned it may be a little graphic and really is more usefull to a Dr who is familiar to these types of procedures so if you are squeamish please be forewarned  !!!!!. http://jco.ascopubs.org/cgi/content/full/24/30/4944 "" target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 " target="_blank" rel="nofollow">http://jco.ascopubs.org/cgi/content/full/24/30/4944 Good luck with your research MC2012      Thank you for responding. Coming across this site has been a blessing! Y'all give so many of us hope. For y'all to have experienced this first hand and then willingly give advice and share your stories is a blessing that I can't thank y'all enough for! My aunt has been scheduled for surgery next week for a complete hysterectomy. They will also be doing surgery on her bladder,but to what degree we are unsure of.She will be given details on that Friday. She has been informed that she will require chemo, but to what type has not been determined yet. I hope that you will keep in touch and I will do the same. I will keep you in my prayers! MC2012 Wed, 28 Mar 2012 00:00:00 GMT On Mar 27, 2012 4:37 PM chukman wrote: On Mar 27, 2012 3:32 AM MC2012 wrote: On Feb 12, 2011 1:05 AM mos1502 wrote: On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care xHope that your doing well. If at possible I would like to get feedback from you.Hey Im doing really well.  No reoccurance since my bladder was taken out Feb 28/11.  I didn't need chemo, didn't need radiation and am a pretty rare bird.  By opting to have a radical cysectomy I think it saved my life.  I didn't feel right getting a partial and something inside me kept telling me don't do it and jump in and get the bladder out.  I have had a few issues of infections with my conduit but that is something I can deal with.  There is hope out there...stay positive and keep fighting!!! Thank you for taking out the time to respond. Coming across this site is a blessing! I'm so glad that your doing well. You give so many of us hope! I'm staying positive with her prognosis. She's having surgery next week. I'm unsure of what surgery they will do on bladder.She will find that out on Friday.They will also be doing a complete hysterectomy. They have informed her that she will require chemo in addition to surgery. As of right now their unsure of what type of chemo. I will pass on the feedback y'all have been so generous to give to me. Thank you once again! I hope that you can keep in touch with updates and I will do the same. MC2012 Wed, 28 Mar 2012 00:00:00 GMT On Mar 27, 2012 3:32 PM MarkVMueller wrote: On Mar 23, 2012 2:46 AM MC2012 wrote: On Feb 28, 2012 7:18 PM MarkVMueller wrote: Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... MarkYour story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!Sorry to hear about your ant MC2012, I wish her and yourself a lot of strength. This place is a good one to get information. Your auntie will first get a scan, the "normal" CT with contrast liquid and PET are good for different things and sometime if it is in the bones or brain a MRI is the choose option. These are the things you will have to have an oncologist you trust discuss with your auntie and I can only suggest second opioned by a different institute/doctor. Cheers, MarkThank you for responding. It helps knowing there's a place,I can go to that not only understands what my aunt is going thru,but also can give helpful advice.Just that you took out the time to respond is a blessing! I hope that we can stay in touch with updates. I will keep you in my prayers. My aunt has been scheduled for surgery next week. They discussed with her that she will require chemo in addition to surgery. Their unsure of what type just yet, I will pass on all the feedback that y'all have been so generous to give to me. Thank you once again! MC2012 Wed, 28 Mar 2012 00:00:00 GMT Your aunt is fortunate to have you advocating on her behalf and I wish both of you  well on your quest !!! I have only received cyto reductive surgery ( in 2006 25lb's of tumor was removed in a 14 hr surgery) In Washington Hospital Ctr Maryland ) also received HIPEC.... aka...Heated chemo, applied topically in the op room for 2 hrs , and continued for 4 more days aka "shake & bake" . I received only follow up care for 4 years to monitor for renewed growth. Then in 2010 due to some small recurrence I again received a 12 hr surgery with 2 hrs of HIPEC. In March 2012 I have started to receive IG-IMRT (radiation therapy) To try to shrink a persistent tumor located in a difficult to reach area behind the Stomach. This hopefully will shrink and or destroy the tumor, I only have been monitired by ct with contrast.. as my doctors feel with mucinous tumor PET will reveal little, I am not sure why they feel this way .However I am aware that Urachal Cancer presents differently in some people ,therefore only doctors with some access to study data etc.. can evaluate these kind of situations . There is research available from M D Anderson studies , Dr Arlene Radtke.... WHC Dr Sugarbaker .. This cancer is apparantly more common in Japan and there is exciting research being done there , I have recently found a Dr in Worcester MA. with some experience in HIPEC but only one prior UA patient ,  UA is  rare disease and requires lots of personal digging on the internet to uncover any data or advice and then proceed with caution as there is also some misinformation . If you wish to read more about this case I have provided a link to an article published in 2006 but please be warned it may be a little graphic and really is more usefull to a Dr who is familiar to these types of procedures so if you are squeamish please be forewarned  !!!!!. http://jco.ascopubs.org/cgi/content/full/24/30/4944 Good luck with your research MC2012       Abovegrass Tue, 27 Mar 2012 00:00:00 GMT On Mar 27, 2012 3:32 AM MC2012 wrote: On Feb 12, 2011 1:05 AM mos1502 wrote: On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care xHope that your doing well. If at possible I would like to get feedback from you.Hey Im doing really well.  No reoccurance since my bladder was taken out Feb 28/11.  I didn't need chemo, didn't need radiation and am a pretty rare bird.  By opting to have a radical cysectomy I think it saved my life.  I didn't feel right getting a partial and something inside me kept telling me don't do it and jump in and get the bladder out.  I have had a few issues of infections with my conduit but that is something I can deal with.  There is hope out there...stay positive and keep fighting!!!  chukman Tue, 27 Mar 2012 00:00:00 GMT On Mar 23, 2012 2:46 AM MC2012 wrote: On Feb 28, 2012 7:18 PM MarkVMueller wrote: Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... MarkYour story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!Sorry to hear about your ant MC2012, I wish her and yourself a lot of strength. This place is a good one to get information. Your auntie will first get a scan, the "normal" CT with contrast liquid and PET are good for different things and sometime if it is in the bones or brain a MRI is the choose option. These are the things you will have to have an oncologist you trust discuss with your auntie and I can only suggest second opioned by a different institute/doctor. Cheers, Mark MarkVMueller Tue, 27 Mar 2012 00:00:00 GMT On Mar 24, 2012 3:01 AM PhilA wrote: Hi Mark, I've fully recovered from my surgery and am moving towards chemo. I had the pathology reviewed at Johns Hopkins and was told that my tumor was 1/3 adenocarcinoma and 2/3 sarcomatoid. The latter cell type is so rare that neither Hopkins, nor my oncologist have ever heard of this cancer type in urachal tumors. I met with an oncologist in Montreal who has seen 6 cases of urachal cancer. he recommended 4 cycles of chemo regimen: Fluorouracil, Leucovorin, Gemcitabine, and Cisplatin. I am going to NEw York to see a Dr. Jonathan Rosenberg this week as Memorial Sloan Kettering Cancer Center for a consultation. Noone has yet told me with conviction that this or another chemo regimen WILL work. It might, and I will give it a try, pending the consultation. How are you? PhilHi Phil I wish you the best of luck and confidence. We have to live with the fact that nobody really knows Urachus cancer and that there are just to few cases and reports to get a sense what "generally" works. I will discuss the chemomix you mention with my oncologist coming monday and be happy to give you those "5 cents". In the end all of us are walking on the edge, but each a different line. I had 3 cycles of Gemcitabine and Cisplatin, but to no avail. The combination you mention seems to be the one they are currently testing a MC Anderson in a phase II clinical trial (supposed to end February 2013). I have not yet seen any results out of that trial - so I would of course be also interested if you get infos thru your consultations. The strategy I have with my oncolgists and second opinioned with the tumour board at the University Hospital of Zürich is to use chemo as the last option, when surgery or radiation is not possible anymore. Apart from those 3 cycles of gem/cis I will have no "pre-emptive" chemo, at least that is the view right now. This also has to do with the fact that I am strong enough - physically and mentally - to endure the operations and get back onto my legs. Some new infos I have about the stereotactical radiation (Truebeam, 4 times 12 grey per session) I had done a meta (ca. 1.5 cm) in my right upper lung some month before which was then removed at the same time as another meta was removed in the mediastinum (between lungs) is, that the meta in the lung still showed some living cancer cells, <1%, this 3 month after stereotactical radiation. If the cancer would have been able to grow again out of that meta is not clear. Just had another consulation today and will have a fully body CT including head this friday and then consultation about CT-results on Monday again.  I have right at the top of my head in the skin a growth about the size of a bean. Not clear yet what it is, but it may be a meta. I will have it removed and will discuss the procedure coming Monday - compared to my other operations this should be an easy walk ;-) Keep your heads up, been doing this now since 3.5 years and I am fit, smile and enjoy my life and family. Cheers, Mark. MarkVMueller Tue, 27 Mar 2012 00:00:00 GMT On Feb 12, 2011 1:05 AM mos1502 wrote: On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care xHope that your doing well. If at possible I would like to get feedback from you. MC2012 Tue, 27 Mar 2012 00:00:00 GMT On Jan 30, 2006 12:00 AM Quaestor wrote: Dr Songbird - I am a new member on the board today (1-30-06). I've read a bit of this thread and appreciate what you have to say. I was diagnosed with urachal cancer in November, 2004, soon after I had turned 37. Initial treatment was surgery to remove a grapefruit-sized tumor. The doctors found small "seed" tumors spread throughout the abdominal cavity, ranging in size from popcorn kernels to an inch in diameter. They had to take a little of the bladder but luckily nothing was inside any other organs. (Perhaps that's why it took so long to find - the only real symptom I had was severe abdominal pain for about a month.) I've been on chemo since then, and luckily I am doing quite well. I have been told that I am a permanent chemo patient. My oncologist consulted with the local "Tumor Board," MD Anderson, and the Mayo Clinic, and the consensus was to treat mine like colon cancer. I had a Port-o-Cath implanted and get the drugs every two weeks. (Oxaliplatin at first - yuck - and 5-FU; now my dose has been cut way back and I get only the 5-FU.) I've had about five CT scans over the last year and all have been clear, but no MRIs. And the doctor tracks the level of a marker chemical - CEA ("carcenoembryonic antigen"). The levels have always been at the lowest level the test can measure. Having chemo every two weeks, except for periodic breaks (I'm told 3-4 times per year, for a vacation, for example), seems like a bummer...but it beats the alternative! I am down for a couple of days after each treatment, so I sit at home and catch up on the cooking shows. When I was getting the higher doses of chemo I had some nerve and skin problems but those are gone now. This cancer is not fun but there are a LOT WORSE things that could have happened to me! In the back of my mind I hope for a miracle pill, but in the meantime I try as much as possible to live my life as I did before. I have two kids to raise (3 and 12) and a house to pay off, after all! (And a truck we bought last summer...I have every intention of meeting my financial obligations!) I felt down when I was sitting in the hospital after my surgery, as to be expected, but I decided that there is a certain percentage of cancer patients who are survivors, and that I would be among that group. If there is anyone else who has had or is having a similar treatment I'd love to hear from you (or anyone else in our exclusive "urachal cancer" club)! WarrenI know this post is old but hoping that you will respond with feedback. MC2012 Tue, 27 Mar 2012 00:00:00 GMT On Jun 08, 2011 9:53 PM SonInNeed wrote: Hi My mother has stage 4 Urachal Cancer and was diagnosed 05/2010. They went ahead and took her whole bladder in August. She went for 2nd surgery today and was told their was nothing they could do due to the tumors being close to blood vessels and they did not want her to bleed to death. The say 2 years at most and me being only 20 and seeing things a little clearer now can not deal with this being an only child and half way through college. More then all she doesn't deserve this being the only person ever there for me in my life more than anything. I have gotten as much reasearch as I could and haven't noticed much about the blood vessel situation so any help please.I'm so sorry to hear about your mothers condition. Continue to pray. Prayers work miracles. MC2012 Tue, 27 Mar 2012 00:00:00 GMT On Feb 13, 2012 2:40 PM Danzarut wrote: On May 10, 2011 6:45 PM lancjohn wrote: I have recently been diagnosed with Urechal Adinocarcinoma. Part of bladder was removed and extensive resectioning done. Lymph node closest to cancer was posative and was removed all other nodes were clean. We are trying to decide if chem would be helpful. I also have prostate cancer in very early stage. Any suggestions and/or referas appreciated. ThanksI hope that you are doing okay since your last post. Can I ask where you are being treated? My brother just had similar surgery and is awaiting the results of pathology. Given the rarity of this cancer, I want to ensure that he is speaking to the right oncology team. Thank You My aunt was diagnosed a week ago. Im trying to get feedback anything would be helpful, please! MC2012 Tue, 27 Mar 2012 00:00:00 GMT On Nov 04, 2011 3:08 AM Abovegrass wrote: Hi All Its been some time since I last checked in to this message board , I am well , working full time , and keeping my hopes up ,The U A cancer is monitored , I expect to see surgery again early 2012, small 2.5cms nodules in abdomen with slow growth ( a vast improvement from the 25lb's in 2005 ), My doctors at Massachusetts General Hosp, & Washington Hosp Ctr, do not seem to advocate any chemo or rad , Instead they prefer the HIPEC & Cyto-Reductive methods, It seems to me no other treatment is as effective across the range of patients on this messge Board, I am now almost 6 years since my 1st diagnosis. and consider myself very fortunate to be a Dr Sugarbaker patient. ( 2 surgerys) The possibilty of removal of the tumors in my case through skillfull surgical tactics, brings my condition closer to cancer free each visit to the Operating Room , It is a real challenge to UA Patients & Dr's to select a treatment course whether it be Chemo , Radiation, HIPEC , CRS, and frontier treatments such as microwave, laser & Truebeam technology, or any combination of the above, I draw most strength in the thought that we can buy valuable time by trying to stay positive in the hope that a breakthrough is not in the too distant future "So the road may wind and turn, Who can tell what we may learn, For we have yet to find our way, In search of hope... another day."   Til the next time... Steve S.If at all possible I would like to get some more information regarding your physicians and treatments. MC2012 Tue, 27 Mar 2012 00:00:00 GMT Hi Mark, I've fully recovered from my surgery and am moving towards chemo. I had the pathology reviewed at Johns Hopkins and was told that my tumor was 1/3 adenocarcinoma and 2/3 sarcomatoid. The latter cell type is so rare that neither Hopkins, nor my oncologist have ever heard of this cancer type in urachal tumors. I met with an oncologist in Montreal who has seen 6 cases of urachal cancer. he recommended 4 cycles of chemo regimen: Fluorouracil, Leucovorin, Gemcitabine, and Cisplatin. I am going to NEw York to see a Dr. Jonathan Rosenberg this week as Memorial Sloan Kettering Cancer Center for a consultation. Noone has yet told me with conviction that this or another chemo regimen WILL work. It might, and I will give it a try, pending the consultation. How are you? Phil PhilA Sat, 24 Mar 2012 00:00:00 GMT On Mar 23, 2012 2:46 AM MC2012 wrote: On Feb 28, 2012 7:18 PM MarkVMueller wrote: Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... MarkYour story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!My aunt is who has been diagnosed. I apologize about the typo MC2012 Fri, 23 Mar 2012 00:00:00 GMT On Feb 28, 2012 7:18 PM MarkVMueller wrote: Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... MarkYour story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction! MC2012 Fri, 23 Mar 2012 00:00:00 GMT On Feb 22, 2012 11:20 PM mos1502 wrote: Hi All, Just thought I'd post an update, since I posted my initial post back in 2011. I'm now on round 19 of chemo and feeling great and I'm even being told I look great which is lovely to hear. I'm still on the same chemo and same dosage and all review ct scans have been stable to date and next one is due in March so fingers crossed it will be stable, but I'm at a cross roads. I'm not sure whether I should take a break from the chemo for a few months and see how things go, would love to know peoples opinions on the matter. Take Care to All  mos, is surgery no option...the lung can be operated fairly well...had mine operated just some 3 weeks ago, also the stereotactical radation with truebeam is an option. are there to many metas in your case for thes e treatment options? mark MarkVMueller Tue, 28 Feb 2012 00:00:00 GMT Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... Mark MarkVMueller Tue, 28 Feb 2012 00:00:00 GMT Dear Phil I will make a post in a short time about my current status in detail. To answer your questions: The primary follow- ups usually is a CT every 3 month, torso and lower abdomen, no head or legs. If there was a suspicion I got both, PET-CT and Skeleton Scintigraphie, full body. Bone metastases were further detailed with an MRI. I do not feel any other symptons. Gernerally of what I know from my docs a "normal" CT will cover you for bone meta., lung, liver etc. but is less optimal for abdomen. A PET, while not as precise as a contrast CT, can cover your whole body fairly well to discover a new meta. MRIs is used for bone ( and brain but that is now my guess). In my case, where the tumour fortunately is not growing fast, a checkup every 3 month seems approriate. Hope this helped. Mark MarkVMueller Tue, 28 Feb 2012 00:00:00 GMT Hi All, Just thought I'd post an update, since I posted my initial post back in 2011. I'm now on round 19 of chemo and feeling great and I'm even being told I look great which is lovely to hear. I'm still on the same chemo and same dosage and all review ct scans have been stable to date and next one is due in March so fingers crossed it will be stable, but I'm at a cross roads. I'm not sure whether I should take a break from the chemo for a few months and see how things go, would love to know peoples opinions on the matter. Take Care to All   mos1502 Wed, 22 Feb 2012 00:00:00 GMT On Aug 02, 2006 12:00 AM Drsongbird wrote: Joseph and Wife - You offend no one. We are all in this together: your questions are real, the cancer is real, the "unknown" is very real. As you probably have been reading, there just isn't a lot written on Urachal cancer. When you speak with suvivors, each of us has faced a different set of treatments, with the possible exception of those who have seen the same Doc. One statement you made leads me to ask more: what does "found so late" mean to you/your doctor? A "stage" of the disease (the cancer's invasion or spread to adjacent/distant tissues in the body) would be helpful to you as this would give you a marker to measure the extent of disease as well as the success of treatments. Some types of urachal cancer are adenocarcinomas, as your wife's has been labeled. Additionally, the cancer is looked at in other ways (like staging). Encapulated means all of the cancer is completely encased in/by a tumor, and there is no evidence any cancer has spread outside of the tumor. The tumor has also not penetrated the bladder wall or other organ. One of the facts I learned from research is that urachal cancer is a primary cancer, not typically a cancer seed that has come from a different source of cancer in the body. Surgeons and pathologists are usually able to tell on looking at tissue/tumor samples. The doc I had in Chicago almost 12 years ago had seen and operated on several urachal cancer patients. He had seen the most of any doc I could find through telephone/internet search. The doc was straight up with me. He indicated that the cancer was primarily encapsulated, but that it had penetrated the top portion of the bladder. He drew a picture for me of what the surgical procedure would look like, and explained to me about clear margin (area of tissue beyond the diseased that shows no sign of cancer). He indicated that he would be agressive in the surgery, and he was. I'm very glad. He did not plan for me to have chemo or radiation and I have had none. My surgeon explained the original purpose of the urachus, and explained what the surgery would include. He chose to remove all muscle/tissue that was formed adjacent to the urachas or which originated from the same cell structure which included my navel and the tissue that connected downward to the bladder. He removed the top of the bladder, not the whole bladder. My cancer was listed as a stage III/IV, probably because its so rare it's hard to classify accurately. I have a remarkable (to me) vantage point on this process after almost 12 years. When I look in the mirror, I do see some healty scaring. I no longer have a naval (something that I needed to explain to my 4 children who were very young at the time). I also no longer see life through the big "C" of Cancer. At year three I felt a lot of relief since I had passed the most frequent recurrance time; at year five, I celebrated the moment with my family; at year seven, my doc to me I didn't need to see him any longer as I was clear; at year 10, I stopped talking about the cancer, choosing to share only with those of us that share the same walk. May it be the same for your wife. Ask whatever you need to. We'll share what we have. CraigI recognize that this in an older post, but my brother was recently diagnosed with uracal cancer. Can you tell me the name of your surgeon and oncologist at the Univerty of Illinois? Hope that you are well Dan Danzarut Wed, 15 Feb 2012 00:00:00 GMT Thanks Mark. Will check it out. Good luck. PhilA Wed, 15 Feb 2012 00:00:00 GMT @ bnelson My doctors track my AFP , CA-15-3 , CA19-9 , CA125 , & CEA. Before my surgery my CEA was 14.2, ....after surgery it dropped to 0.5, and in 6 years it has never been higher than 1.0 It is important to note that different methods may be used to test .....and normal... is different per the type of test used. Hope this helps you Abovegrass Wed, 15 Feb 2012 00:00:00 GMT On Feb 14, 2012 5:50 PM iceberg wrote: On Feb 12, 2011 1:05 AM mos1502 wrote: On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care xI am sorry to hear that the lung spots were not addressed... I am now free from Urachal cancer for over 15 years.  I had done cystoscopies faithfully a few times a year for the first couple than yearly until 10 yrs, not every other year.   Also got ct scans with days of each other as back up, but have not since 10 yrs.. maybe I should continue that piece too. I do pray that the nodules have shrunk!!Can I ask the stage of Urachal Cancer you were diagnosed with? A family member was just diagnosed and had the surgery last week - removed 1/3 of his bladder, belly button and the urachus. By the sounds of it the margins were clear, but we were also told that the cancer petruded into the lining of the bladder. We are now waiting for pathology results to confirm stage. Danzarut Tue, 14 Feb 2012 00:00:00 GMT Does anyone have cancer markers checked.  My dads CEA has started to rise, it is now 9.2.  Bonnie bnelson Tue, 14 Feb 2012 00:00:00 GMT On Feb 12, 2011 1:05 AM mos1502 wrote: On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care xI am sorry to hear that the lung spots were not addressed... I am now free from Urachal cancer for over 15 years.  I had done cystoscopies faithfully a few times a year for the first couple than yearly until 10 yrs, not every other year.   Also got ct scans with days of each other as back up, but have not since 10 yrs.. maybe I should continue that piece too. I do pray that the nodules have shrunk!! iceberg Tue, 14 Feb 2012 00:00:00 GMT @ PhilA ... Have you discussed HIPEC with you Drs? It seems you have received timely treatment, and I would guess your Drs will advise you to follow up with Abdomen & pelvic CT scans & bloodwork to monitor your  progress. As mentioned in my previous post I am expecting to undergo some form of treatment in the near future, Currently I have a 3.5 / 4.0cm tumor and I am investigating the possibility of Truebeam or Cyberknife, as an option, because the location of my tumor is difficult to reach by surgery... although surgery is still on the table (no pun intended), Any one with experience of this method I would like to hear of your results, @ Mark... any update with your treatments ?.   Abovegrass Tue, 14 Feb 2012 00:00:00 GMT Dear Mark, I hope up are doing well. I was diagnosed with urachal cancer last week. Was operated on last thurs - 4cm tumor that penetrated the dome of the bladder was removed, as well as my urachus, incl the belly button, and 1/4 of my bladder. Margins appeared clear, waiting for pathology results. While there is no other cancer in my abdomen (as far as i know, by looking at a ct scan), I want to make sure there is no cancer anywhere else. Did you have scans of your legs, lungs and head as part of your post-op follow-up? What kind of scans we're they? PET, MRI, other? Do you have any other symptoms from this disease? Lightheadedness perhaps? Thank you and I hope all goes well for you. Phil PhilA Tue, 14 Feb 2012 00:00:00 GMT On May 10, 2011 6:45 PM lancjohn wrote: I have recently been diagnosed with Urechal Adinocarcinoma. Part of bladder was removed and extensive resectioning done. Lymph node closest to cancer was posative and was removed all other nodes were clean. We are trying to decide if chem would be helpful. I also have prostate cancer in very early stage. Any suggestions and/or referas appreciated. ThanksI hope that you are doing okay since your last post. Can I ask where you are being treated? My brother just had similar surgery and is awaiting the results of pathology. Given the rarity of this cancer, I want to ensure that he is speaking to the right oncology team. Thank You  Danzarut Mon, 13 Feb 2012 00:00:00 GMT On Jan 09, 2012 1:07 AM bnelson wrote: Hi.  My dad was diagnosis with urachal adenocarinoma in April 2010.  He had surgery in May 2010, then chemo (no effective).  Then Cyto-reduction and HIPEC on March 28, 2011.  Best option for this type of cancer.  My dad is 65 years old.  How is your son doing. Bonnie Nelson MontanaHi Bonnie I am sorry to hear about your father, I hope his treatments are somewhat helpful. I believe radiation these days is becoming a treatment option more and more, but of course every case is so different and one cannot generalize - it just depends to much on any given status. All the strenght to you and your father. Mark MarkVMueller Mon, 09 Jan 2012 00:00:00 GMT Well, another quick update. First the good news, the stereotactical radiation (with the new TrueBeam radiation machine) on a single metastases in my lower right lung area seems to have worked (so far). The tumor is smaller after 6 weeks and the PET-CT does not show activity. Unfortunately a new single metastases has been discovered between the lung, stereotactical radiation is not an option since it is too close to the arterty. Should know this week on how to procede; operation, IRMT radiation. The situation on the tumor on my left upper legbone is unclear, it does show some glowing in the PET but this could also be inflammation. I have some pain standing up, they suspect it could be necrosis of the hummerus bone because of the two radiation therapy. Will have that check out this week...will see. Take care and don't give up. Mark MarkVMueller Mon, 09 Jan 2012 00:00:00 GMT On Jan 09, 2012 1:07 AM bnelson wrote: Hi.  My dad was diagnosis with urachal adenocarinoma in April 2010.  He had surgery in May 2010, then chemo (no effective).  Then Cyto-reduction and HIPEC on March 28, 2011.  Best option for this type of cancer.  My dad is 65 years old.  How is your son doing. Bonnie Nelson Montanais there any chance of getting urachal cancer after a laproscopic surgery of infected urachal cyst...????nybdy in the knw??? bhawana Mon, 09 Jan 2012 00:00:00 GMT Hi.  My dad was diagnosis with urachal adenocarinoma in April 2010.  He had surgery in May 2010, then chemo (no effective).  Then Cyto-reduction and HIPEC on March 28, 2011.  Best option for this type of cancer.  My dad is 65 years old.  How is your son doing. Bonnie N Montana bnelson Mon, 09 Jan 2012 00:00:00 GMT Hi All Its been some time since I last checked in to this message board , I am well , working full time , and keeping my hopes up ,The U A cancer is monitored , I expect to see surgery again early 2012, small 2.5cms nodules in abdomen with slow growth ( a vast improvement from the 25lb's in 2005 ), My doctors at Massachusetts General Hosp, & Washington Hosp Ctr, do not seem to advocate any chemo or rad , Instead they prefer the HIPEC & Cyto-Reductive methods, It seems to me no other treatment is as effective across the range of patients on this messge Board, I am now almost 6 years since my 1st diagnosis. and consider myself very fortunate to be a Dr Sugarbaker patient. ( 2 surgerys) The possibilty of removal of the tumors in my case through skillfull surgical tactics, brings my condition closer to cancer free each visit to the Operating Room , It is a real challenge to UA Patients & Dr's to select a treatment course whether it be Chemo , Radiation, HIPEC , CRS, and frontier treatments such as microwave, laser & Truebeam technology, or any combination of the above, I draw most strength in the thought that we can buy valuable time by trying to stay positive in the hope that a breakthrough is not in the too distant future "So the road may wind and turn, Who can tell what we may learn, For we have yet to find our way, In search of hope... another day."   Til the next time... Steve S. Abovegrass Fri, 04 Nov 2011 00:00:00 GMT On Nov 03, 2011 6:35 PM Geoffrey_Paul wrote: I wish you well Mark. InezThanks MarkVMueller Thu, 03 Nov 2011 00:00:00 GMT I wish you well Mark. Inez Geoffrey_Paul Thu, 03 Nov 2011 00:00:00 GMT  Just finished my radiation treatment in the upper leg (12 sessions, 39 grey) and my lung (4 sessions, 12 grey each). While I am carefully pessimistic about the treatment in my upper leg I am "exited" so to speak about the lung metastases, as I was treated by the ultra new and advanced True Beam radiation machine - probably the first urachus patient to receive this treatment. Here some infos about this brand new treatment option: http://en.prnasia.com/pr/2011/05/16/110473011.shtml I will now have a staging shortly before cristmas and will let you know. Take care fellow travellers. Mark MarkVMueller Thu, 03 Nov 2011 00:00:00 GMT So I will go on for now with radiation - for both metastases in the upper leg bone and the right lung. I do have in both cases the fallback option of surgery in case radiation does not work. For the leg due to prior radiation in my groin area there is a risk of subsequent bone fracture (15-20%), but I am willing to go against those odds. I have not yet received the detailed data yet, but it will be about 37 grays in total over 12-12 sessions. With the lung I am in the lucky position here in Switzerland to be able to be using brand new radiation machines which are very precise (they take into account the breathing) and they can also deliver a very high dosage - very close to radio surgery. We are looking at ~60 grays or more within 10-15 session, so very high impact per session. My metastases is about 13x18mm and they say that the can radiate within a 1cm margin, so any side effects or damaging of otherwise healthy cell will be very limited. There have been having very good results with these machines in Holland these last months (with lung cancer and other "know" cancers) ....but still very promising. I will probably be (one of) the first urachus patient to be getting this treatment. In any case if subsequent CTs ~6 to 8 weeks after the last radiation session still show a growth then I have (and will) the option of surgery. Take care all of you out there and I will let you know how things are going. Mark MarkVMueller Wed, 05 Oct 2011 00:00:00 GMT Hi wvleroyhayes Thanks for your wishes. Chemo I guess will be the last straw as it does not seem to be very effective for urachal cancer. I had 3 cycles of cisplatin/gemzar and also zometa - but the cancer came back. Still in discussion to go with either radiation and/or operation, should know in a few days. MarkVMueller Sun, 02 Oct 2011 00:00:00 GMT Hi Mark, i remember talking to you awhile back here, sorry you are having a bad time. My bladder cancer spread to my ribs and a lung also, btw, as of a month ago, i am in remission. Chemo got rid of the cancer in my ribs and the lung. Every case is different i know. They gave me Zometa as a bone treatment, strengthens them, if they do this for you it will mess with your teeth some, and a dentist will not touch you if you have these treatments. Hope thing start getting better. wvleroyhayes Fri, 30 Sep 2011 00:00:00 GMT So, apart from my lung I also have a metastates in my right upper leg bone (femur). Currently reviewing treatment options for both lung and leg - radiation and/or operation. Confident that these two occurences can be removed. MarkVMueller Fri, 30 Sep 2011 00:00:00 GMT It has been a while for me to write about how things are going. Well, in March of this year I had a total shoulder blade replacement (scapula) due to urachus metastases. This was a major operation, had to walk around for 8 weeks with my arm propped up in a cast and now am in physio to get my arm to move again. All considering I am doing very well, I can already move my arm up 100 degrees. Unfortunately there is now an indication of a metastases on my right lung. I will have a PET-CT next week to see if (hopefully) it is a local problem (the "normal" CT only shows one circle of about 12mm, which has grown from the last CT 3 month ago about 2-3 mm). Any infos about Urachus in the lungs, your stories, chemo, radio etc. would be greatly appreciated. Mark MarkVMueller Fri, 02 Sep 2011 00:00:00 GMT Dear Doc, Not sure how this works.  My son is 26 and was recently diagnosised with adenocarcinomoa with urachnal remnanents.  He underwent surgery a week ago, with removal of a large cyst where these cells were found.  I don't believe there was any lymph node involvement, but we are still awaiting some of the final pathology. They also reseccted the dome of the bladder, a portion of the colon and part of the sigmoid/upper rectum, where the cyst was attched.   I remember when they did the cysto, prior to the surgery, the image show a gelatinous image in there. The colo-rectal surgeon told us  he cleared the peritoneium and assured us he feels he had very clean margins.  His specialty is Colo-rectal cancer at UH in Cleveland.  Any reccomendations as to where else we should look for further treatment or what to expect?  What were your symptoms and treatments.  I may have missed some earliers posts.  Thanks Momofd momofd Sat, 30 Jul 2011 00:00:00 GMT On Jun 08, 2011 9:54 PM SonInNeed wrote: She is only 50 also.Dear SoninNeed - How are things going? I haven't been on the site in a long time ans saw your june post. Are you located in an area where you have access to 2nd opinions? I survived UC at age 40 and am now 56. If you would like to be in contact with any of my three sons or daughter, I know they would share what they went through. I'll be glad to walk with you as well. In my prayers, Doc   Drsongbird Fri, 22 Jul 2011 00:00:00 GMT She is only 50 also. SonInNeed Wed, 08 Jun 2011 00:00:00 GMT Hi My mother has stage 4 Urachal Cancer and was diagnosed 05/2010. They went ahead and took her whole bladder in August. She went for 2nd surgery today and was told their was nothing they could do due to the tumors being close to blood vessels and they did not want her to bleed to death. The say 2 years at most and me being only 20 and seeing things a little clearer now can not deal with this being an only child and half way through college. More then all she doesn't deserve this being the only person ever there for me in my life more than anything. I have gotten as much reasearch as I could and haven't noticed much about the blood vessel situation so any help please. SonInNeed Wed, 08 Jun 2011 00:00:00 GMT Hi! I haven’t written to this forum for over a year. Here’s an update.   Following my operation in March 2006, after I was diagnosed with a urachal mucinous adenocarcinoma, a very rare variety of pseudomyxoma peritonei, I had four years completely free from cancer. Then, in February 2010, a routine annual CT scan atBasingstoke Hospital,UK, showed that I had a recurrence, a new tumour right under my belly button. My consultant surgeon’s decision at that time was to watch and wait, and I had another scan in August 2010. This confirmed the existence of the new tumour under my belly button and a few traces elsewhere, but it all appeared to be very slow-growing. I then had an exploratory laparoscopy in October 2010, which confirmed what the last two scans showed. This did not appear to give my consultant surgeon too much cause for concern as his reaction was just to tell me to get in touch with him if I had any problems rather than subjecting me to surgery - which could be quite invasive and would not improve my quality of life. Currently I enjoy a very good quality of life, and I am physically fit at the age of 68. I had two more CT scans, one in December 2010 and one in April 2011, followed by an interview with my oncologist on 18 May 2011. My oncologist did not appear to be too concerned with my condition, confirming that growth appeared to be very slow. He therefore agreed with my consultant surgeon that watch and wait was the best policy, but thought it would be worthwhile taking a closer look at my last four CT scans, going back to February 2010, to see if growth was consistently slow or speeding up. He advised against chemo as it's not very effective on this type of cancer and arranged to see me in a year's time. Looking forward to our summer holiday, driving across France to Switzerland!   My full story is here: http://www.camsoftpartners.co.uk/pmpsurvivor.htm Graham_D Sun, 22 May 2011 00:00:00 GMT I have recently been diagnosed with Urechal Adinocarcinoma. Part of bladder was removed and extensive resectioning done. Lymph node closest to cancer was posative and was removed all other nodes were clean. We are trying to decide if chem would be helpful. I also have prostate cancer in very early stage. Any suggestions and/or referas appreciated. Thanks lancjohn Tue, 10 May 2011 00:00:00 GMT I have recently been diagnosed with Urechal Adinocarcinoma. Part of bladder was removed and extensive resectioning done. Lymph node closest to cancer was posative and was removed. We are trying to decide if chem would be helpful. I also have prostate cancer in very early stage. Any suggestions and/or referas appreciated. Thanks lancjohn Tue, 10 May 2011 00:00:00 GMT I figure when mine returns it will also be asymptomatic. I get scanned again next month. Did you decide to have chemo? jacid Sat, 07 May 2011 00:00:00 GMT jacid I was diagnosed with urachal adenocarinoma in December 2009 and had surgery in January 2010. The surgery went well, I returnned to work and was fine. I had cystos and CTs at three month intervals. In November 0f 2010 my CT showed no cancer present and my Dr. thought another CT was not necessary until May 2011. I have an incision hernia and went back to see my surgical oncologist after my family Dr. explained what it was. I was also feeling slight discomfort in the area if I did too much physical activity. Another CT was ordered.  Much to my surprise the cancer was now present in my omentum. Had I not gone back in February, I would not have known for another 3 months that I was dealing with cancer again. Mine might be an isolated incident, but talking to your doctor about the benefit vs the disadvnatges of CTs on a more regular basis might be a good idea. In both incidents of my diagnosis, the doctor's were dealing with issues other than cancer and no symptoms were present. I have had the cancer since 2004 or longer only no one knew until 2009 when I saw my urologist to follow-up on problems with a TVTO procdure that was done in 2004. HJMOntario Sun, 10 Apr 2011 00:00:00 GMT On Feb 16, 2010 12:17 PM shiv899 wrote: Hi, I started getting symptoms (blood in urine) mid-september'09. After the initial few weeks of treating it as an infection then possible kidney stones it was confirmed through a CT scan & biopsies of my stomach area & bladder that it was a urachal tumor that was malignant. Surgery was done in Dec'09 & based on results, doctors were able to remove and contain it within the surgical margins... along with removing half of my bladder. Doctors have suggested 3 options at this point for me to consider 1. Do annual tests to observe possible recurrence 2. Treatment of Radiation therapy 3. Treatment of Chemotherapy Naturally I'm still in shock as to this entire thing, but I think in a positive way (not the "why is this happening to me" but "this is happening, what can I do about it"). I'm 34 years old, no previous indication of anything of this sort, other than the normal flu now & then. I'd love if anyone can assist me in better evaluating my 3 options. I live in the Caribbean & unfortunately because of the type of cancer, not much information is available about it. Thanks in advance.          Hi All, It is with great sadness and hurt that I tell you Shiv succumbed to cancer on Jan 15th. If anyone has questions about his case, please feel free to ask. mrs.shiv899 Tue, 22 Mar 2011 00:00:00 GMT After having molecular profiling, they decided, when I have a recurrance, they would use Folfiri (5FU, Irinotecan and Leucovorin). Everythiing I have read says it's radiation resistant. jacid Fri, 18 Mar 2011 00:00:00 GMT I am 65 female nurse w/ metastasis when I recieved this diagnosis, in 2 lymph nodes and small spot in my abdomen. Had surgery w/ partial cystectomy. I've had no chemo and 1st follow up scan (3 months) was clear. I'll get scanned again in June, unless symptomatic. I'm still working full-time and feel good. I think the metastasis has a big bearing on outcome. jacid Fri, 18 Mar 2011 00:00:00 GMT Brenda, I would recommend a second opinion from USC Norris Cancer Hospital. I also had Urachal cancer and saw Dr. Elia Skinner, wonderful doctor. Aside from that and to me the most important was my faith in God. I was searching the internet for healing scriptures and came across Joyce Meyers healing scriptures and printed that and kept reading it 3x a day which built up my faith and trust in the one person who can turn my mourning to dancing! I'm not sure if you are a believer but when all else fails, I looked to Jesus for help and he did! carolpag Mon, 07 Mar 2011 00:00:00 GMT I am a Survivor of Urachal Cancer and escaped chemo, but also have "no belly button".... my cut is vertical.    My ordeal started in 1995 (I was 30 yrs old) with a gyn that said "bleeding inbetween is normal for some women."   In mid-1996 I found a new gyn and he said to go immediately to a urologiest.   So, surgery took just under 1/3rd of my bladder and urachal tube and belly button.    Now 15 years since surgery and cancer free! iceberg Wed, 02 Mar 2011 00:00:00 GMT On Jan 31, 2011 1:12 chukman wrote: and it is T2 went through the wall of bladder but no tissue involvement or other organs yetHi, I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great. I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care x mos1502 Sat, 12 Feb 2011 00:00:00 GMT and it is T2 went through the wall of bladder but no tissue involvement or other organs yet chukman Mon, 31 Jan 2011 00:00:00 GMT On Jan 22, 2011 2:44 AM MarkVMueller wrote: Hi Annalee First of all there is always hope, I have three kids - they need me, I know how you feel.I  am going into my third year after diagnosis and there are quiet some other "older" survivors here on the forum. Whatever the doctors propose, go and get a second opinion with an institute that has a lot of experience with cancer. If you read my posts you see that I have gone thru 3 operations, 2 radiation treatments and now currently chemo. I am doing fine, had minimum side effects with all treatments. Even now, on my 3d cycle of chemo I feel close to normal apart from 3-4 days of tiredness - even my hair won't fall out. Every patient reacts differently, don't worry yourself now and certainly not about posts not directly from patients themselves. Concentrate on getting as much factual information you can, it is important when you talk to your oncologists that you understand as much as you can. Do not hesistate to ask questions to your doctors or doubt them, they are not gods. And again, always with every step get an independent (different clinic) opinion. Can you tell us/me some more details. Where is the cancer located? What scans (CT, PET-CT, bone scintigraphy) have been done or are planned?  It is at the top of the bladder.  They want to do a partial cystectomy with colon repair.  I have had a bone scan, CT, cystoscopy.  No chemo, no radiation just wait and see method..that makes me nervous.  I did get a 2nd opinion and his is the opinion that isn't sitting right. chukman Mon, 31 Jan 2011 00:00:00 GMT On Jan 22, 2011 2:44 AM MarkVMueller wrote: Hi Annalee First of all there is always hope, I have three kids - they need me, I know how you feel.I  am going into my third year after diagnosis and there are quiet some other "older" survivors here on the forum. Whatever the doctors propose, go and get a second opinion with an institute that has a lot of experience with cancer. If you read my posts you see that I have gone thru 3 operations, 2 radiation treatments and now currently chemo. I am doing fine, had minimum side effects with all treatments. Even now, on my 3d cycle of chemo I feel close to normal apart from 3-4 days of tiredness - even my hair won't fall out. Every patient reacts differently, don't worry yourself now and certainly not about posts not directly from patients themselves. Concentrate on getting as much factual information you can, it is important when you talk to your oncologists that you understand as much as you can. Do not hesistate to ask questions to your doctors or doubt them, they are not gods. And again, always with every step get an independent (different clinic) opinion. Can you tell us/me some more details. Where is the cancer located? What scans (CT, PET-CT, bone scintigraphy) have been done or are planned?  It is at the top of the bladder.  They want to do a partial cystectomy with colon repair.  I have had a bone scan, CT, cystoscopy.  No chemo, no radiation just wait and see method..that makes me nervous.  I did get a 2nd opinion and his is the opinion that isn't sitting right. chukman Mon, 31 Jan 2011 00:00:00 GMT All - Doc here. I did have Urachal adenocarcinoma - sorry I didn't use the full terminology. As you may have seen before, I had a very thorough surgery in 1994 with no recurrance. The stage for me was determined initially by a uretheral camera/biopsy. Although they couldn't see the the tumor had gone through the bladder wall, they did see it as embeded. The diagnonsis of penetration was made during/post surgery. Staging was difficult as there are too few cases to really create definitive info in urachal cancer i.e. it looked one way to the camera, another to the surgeon. Please let me know how you are doing - glad to discuss anything at all. My best, Doc   Drsongbird Fri, 28 Jan 2011 00:00:00 GMT I note with some interest that over the last few few years most of the corresponents to this forum have ceased to contribute. In brief: we are mortal beings - however many years and numbers we count. Urahcal cancer is at present an incurable and virulent cancer. If you have it: you will die. If you do not have it: you will die. We all die, yet if if you have such a disease you are likely to die tomorrow and not the day after tomorrow (but be re-assured the rest the rest of your loved ones WILL die the day after tomorrow - or sooner). I, as a mortal being understand that that the idea of 'ceasing' is anathema. Where were we before we 'came' in to being? No-where, or so we beleive, well it it is not so difficult is it to go back from whence we came? Death is as natural as sunrise and sunset.   dylan100 Fri, 28 Jan 2011 00:00:00 GMT Hi Annalee First of all there is always hope, I have three kids - they need me, I know how you feel.I  am going into my third year after diagnosis and there are quiet some other "older" survivors here on the forum. Whatever the doctors propose, go and get a second opinion with an institute that has a lot of experience with cancer. If you read my posts you see that I have gone thru 3 operations, 2 radiation treatments and now currently chemo. I am doing fine, had minimum side effects with all treatments. Even now, on my 3d cycle of chemo I feel close to normal apart from 3-4 days of tiredness - even my hair won't fall out. Every patient reacts differently, don't worry yourself now and certainly not about posts not directly from patients themselves. Concentrate on getting as much factual information you can, it is important when you talk to your oncologists that you understand as much as you can. Do not hesistate to ask questions to your doctors or doubt them, they are not gods. And again, always with every step get an independent (different clinic) opinion. Can you tell us/me some more details. Where is the cancer located? What scans (CT, PET-CT, bone scintigraphy) have been done or are planned?   MarkVMueller Sat, 22 Jan 2011 00:00:00 GMT On Mar 11, 2006 12:00 AM Annac wrote: I am a 37 year old female who was diagnosed on 3/6/06 with urachal adenocarcinoma. I have a 7 mo old daughter who was the reason that the tumor was discovered. I was bleeding thru most of my pregnancy and still after she was born. I ended up at the urologist who thought I had a polyp and did a transurethral resection of a bladder tumor only to find that it was urachal cancer. The tumor was the size of a half dollar and did not break through the bladder wall. My CT scan and chest xray are clear except for a 5mmm lesion on my liver that they do not seem too concerned about. I don't know what to think. I don't know what stage I'm in. I worry now that the doctor has cut into it that this stupid little cells are floating around and are going to show up someplace else. Is there any way to find out is it just serial CTs and MRIs for the rest of my life. I am in Chicago and am going to go to MD Anderson for a second opinion in the next 2 weeks. I am scared out of my mind. It took he 4 days to even think about fighting this because it is such an awful cancer. My husband and I have only been married 2-1/2 years and were planning on having another child. I don't know if this is possible, but I don't want to give up on our plans. I just keep hearing how many people continue to have the cancer show up elsewhere in their body. It is all so overwhelming. My daughter needs me and I don't want to leave her alone. Right now it is all so hard. I'm not worried about the surgery, but I want to have the right one done and receive the best, most effective treatment that this thing doesn't come back. I doesn't belong in me. Do you have any suggestions? What more can I do?I just read your story and thought omg..this is me right now.  I was wondering how things are and what treatment you went through and how you are doing now?  I just got diagnosed and looking for anyone with answers or suggestions..thanks Annalee   My name is Annalee and I live in Sk. I am 35 yrs old and Dec 30th my life crumbled. I have 3 children aged 4 months, 2 yrs and 11. On dec 30 they told me I have a very rare and aggressive bladder cancer called urachal adenocarcinoma. The continued on to tell me most don't live very long and if I make it 2 years only 50% make it to 5 yrs. They gave me 3 options -1) partial bladder removal, 2) full bladder removal with a intestine pouch which I'd have to cathertorize myself several times a day and very high risk of complications and infection or 3) full bladder removal with an outside bag attached. All 3 surgeries include full hysterectomy and lymph nodes removed as well as the urachal tube and muscles/tissue around it. I am so scared and they tell me chemo and radiation don't work so they can take my organs and tissue etc but then we just wait. I refuse to believe that I have to just sit around and wait. I am looking for success stories, treatments, anything...as there isn't much out there on this type of cancer as it is that rare. Please..can someone give me hope and help me! chukman Mon, 10 Jan 2011 00:00:00 GMT On Dec 18, 2010 4:59 AM ladymoonlite wrote: I'm thrilled to start seeing survivors here!  Don't know how I missed these threads, but I thank my sister for pointing me back in this direction. At this point, I've been through the PC (Jan 2010), Cisplatin/Gemzar chemo plan from MD Anderson (no good), carboplatin (no good)... Plan B was oxaliplaitin... (no good).  Took a break from chemo to do  some radiation for pain management due to mets to the skeleton, started on Plan C, irinotican (sp?), went back to more radiation for pain management and tumors on spine/hip, and I'll start back on chemo Plan C next week.  After that I'm taking a break for a vacation and will expect to return to more chemo after mid-January 11 before we do another scan to find out if this one is working.  I look forward to any information anyone has to offer - especially anyone who can use the words "Urachal Cancer Survivor"!  ladymoonlite I wish you all the strength and endurance necessary for this. Any information I can give you from my end which may help, just let me know. MarkVMueller Mon, 20 Dec 2010 00:00:00 GMT I'm thrilled to start seeing survivors here!  Don't know how I missed these threads, but I thank my sister for pointing me back in this direction. At this point, I've been through the PC (Jan 2010), Cisplatin/Gemzar chemo plan from MD Anderson (no good), carboplatin (no good)... Plan B was oxaliplaitin... (no good).  Took a break from chemo to do  some radiation for pain management due to mets to the skeleton, started on Plan C, irinotican (sp?), went back to more radiation for pain management and tumors on spine/hip, and I'll start back on chemo Plan C next week.  After that I'm taking a break for a vacation and will expect to return to more chemo after mid-January 11 before we do another scan to find out if this one is working.  I look forward to any information anyone has to offer - especially anyone who can use the words "Urachal Cancer Survivor"!   ladymoonlite Sat, 18 Dec 2010 00:00:00 GMT I am now in my 5th year since diagnosis.  I am still going through treatments but I am strong, healthy and able to do the treatments.  Blessings and Dr. June Meymand. She specializes in keeping cancer patients biochemically strong and able to continue whatever treatments are necessary. I have exceptional doctors also thanks to Dr. June.  Three years ago a famous hospital in Houston, Tx told me to go home, they had nothing else to offer me.  My son found Dr. June Meymand.  This journey takes many different twists and turns and it is so important to be physically as strong as possible to continue.  This type of cancer is more of a chronic condition with ongoing treatments.  I am staying with Dr. June at the center now getting reading for another type of treatment. I hope this helps.  DM, Dallas, Tx. survivor1dallas Tue, 30 Nov 2010 00:00:00 GMT I just had my 5th year anniversary since diagnosed with urachal cancer.  I would not be here today if not for the care and research and work of Dr. June Meymand, Dallas, Tx.  She not only has kept me living, working, nutritionally sound enough to go about life; she also put together a team of oncologists, surgeons, etc. who all work together in the best possible interest of the patient.  First and foremost cancer patients have to remain physically and biochemically strong enough to continue whatever treatments we need to go through.  Dr. June Meymand does just this. I have met many patients of hers during this five year period and I personnally know more than 50% have no evidence of disease for several years now.  I am staying at the center now for treatment.  The energy, care and dedication are beyond compare.  Blessings, DM Dallas, Tx survivor1dallas Tue, 30 Nov 2010 00:00:00 GMT On Nov 09, 2010 9:21 AM TripleE wrote: Hello, I also am not sure how this is working. I feel the need to pass on  A few books that I have found very interesting.  [ Knockout, Breakthrough. Eight steeps to wellness.] Written by Suzanne Somers. A cancer survivor her self.  Also Shark's Don't Get Cancer. How Shark cartilage could save your life.. By Dr I William Lane & Linda Comac. I know there are a lot of books out there to read but thees are some Im finding very empowering. I have been Diagnosed with Urachus Urachal Adeno.9-27 2010.  I have had no surgery's as of yet. I have an apt for a second opinion 11-19-2010 And to try to find out a lot more of what the doctor would like to do as I Am not big on the thought of Kemo our Radiation. Have any of you done that? Had a surgery then taken a non Western Med approach To help your immune system. I am talking about Supplements & vitamins, Minerals. And so on.  How and when do you get a stage of your cancer? Is it true that only after surgery you get the stage you are in? Any one know what a staging work up is ? Our when you can get that? How aggressive is this cancer? My first sing was when I urinated blood. and a lot of it just one night. but went to the hospital. That was the beginning of all this. Hope to hear form some of you. Very confused on all of this. EricHi TripleE I have had 2 rounds of radiation, which have been without any side effects apart from some very slight nausea. It has been my experience that modern radiation is very precise and effective. At the Zurich University Hospital we have one of the leading radio-oncology clinics in the world, try to find an institute which has the most modern equipment.   I am not really keen on Chemo myself, but opted for it despite the dangers of long term side effects. In the end I want to beat this cancer - and will beat it!   Find a good general oncologist whom you trust and let that person coordinate the process. Have your case discussed interdisciplinary (surgery, chemo, radiation). A process which I have to be found standard in Swiss hospital for instance. MarkVMueller Thu, 25 Nov 2010 00:00:00 GMT Currently in remission after a distant metastases in the left shoulder I will now begin a chemo (6 cycles of cisplatin/gemzar).   I have started a new thread "Chemo for Urachal Cancer" in the Bladder Cancer Forum, where I will share my experience with the process in the next few months. Please tell us/me about your chemo-urachal-journeys. MarkVMueller Thu, 25 Nov 2010 00:00:00 GMT Hello, I also am not sure how this is working. I feel the need to pass on  A few books that I have found very interesting.  [ Knockout, Breakthrough. Eight steeps to wellness.] Written by Suzanne Somers. A cancer survivor her self.  Also Shark's Don't Get Cancer. How Shark cartilage could save your life.. By Dr I William Lane & Linda Comac. I know there are a lot of books out there to read but thees are some Im finding very empowering. I have been Diagnosed with Urachus Urachal Adeno.9-27 2010.  I have had no surgery's as of yet. I have an apt for a second opinion 11-19-2010 And to try to find out a lot more of what the doctor would like to do as I Am not big on the thought of Kemo our Radiation. Have any of you done that? Had a surgery then taken a non Western Med approach To help your immune system. I am talking about Supplements & vitamins, Minerals. And so on.  How and when do you get a stage of your cancer? Is it true that only after surgery you get the stage you are in? Any one know what a staging work up is ? Our when you can get that? How aggressive is this cancer? My first sing was when I urinated blood. and a lot of it just one night. but went to the hospital. That was the beginning of all this. Hope to hear form some of you. Very confused on all of this. Eric TripleE Tue, 09 Nov 2010 00:00:00 GMT Hello Linda L. I just read your note to DR songbird. I also noticed the same, No Adeno in this description. I have the same as you. Was your stage determined after your surgery? I have been told that stage is unknown until after surgery. But I am hearing of something called a staging work up. Have you heard of this ? and if so when does this take place? I have many other questions but will hold them for now hoping to hear from you soon. Hope this finds you very well. Thank you Eric TripleE Tue, 09 Nov 2010 00:00:00 GMT Hi LML I am a 45 year old male from Switzerland and have had similar issuess/history as yourself; partial cystectomy in Jan 2008. 2 lymph nodes enlarged, discovered april 2010. removal of 21 lymph nodes in abdomen in mai 2010. radiation of abdomen because there was penetration of the urachas cancer cells of the lymph nodes (50 gray). unfortunately now 4 weeks ago a metastases was discovered in my left shoulder, and I will now receive radiation (20 gray), which should resolve that local problem. CTs do not show other metastases at the moment. I am being treated by the University Hospital of Zuerich, the oncology department (run by Prof. Dr. Knuth) considered to be one of the leading in the world, especially also the radio oncology with the most modern machines available. My experience so far in terms of treatment/strategy has been: - surgical removal if possible is first choice - radiation treatment (lymph node regions and now shoulder) in which the oncologist are fairly certain to be able to remove the local problem/occurence - chemo so far I have not received, but I will now have some sessions to discussed that avenue as well. there is unfortunately very little positive information about chemo with urachal cancer available, some success reported in Japan and Australia, and of course infos from Anderson Clinic.   I'll be glad to share more detailed information for anybody who is in need....   Mark   MarkVMueller Thu, 21 Oct 2010 00:00:00 GMT On Mar 20, 2010 7:03 PM Veggie747 wrote: Hello, I probably have urachal cancer, probably because they only can tell me for sure AFTER the surgery. It is an adeno carcinoma anyway. Twoo years ago, i had two Turbs not radical surgery which actually should be done which makes me a bit worried. Did you gave your surgery in Texas? VeggieHello Veggie747 -   I hopeyou have progressed through your surgery and are feeling stronger. I have not checked this site for a long time, my apologies. In December I will be 16 years clear of UA cancer. Please let me know how you are doing - I would be glad to walk with you.   My best, Doc   Drsongbird Wed, 22 Sep 2010 00:00:00 GMT On apr 29, 2005 12:00 Drsongbird wrote: I want you all to know there is hope. In December of 2005, I will be 11 years cancer free. My diagnosis was stage 4 urachal cancer, and I had surgery in Chicago at the University of Illinois. The process was long and difficult - as you all may already know. Doctors at first thought I had a vernereal disease, even tho I kept telling them there was no chance. At the time I was a single dad with 4 children, ages 14 down to 4. The surgery took along time to recover from. I know how fortunate I am that they took a great deal of muscle (including navel, top of bladdere and intersceding muscle), as I have had no recurrance and did not need chemo. I have had additional surgeries, somewhat related to the first, but none have exposed more cancer. Please feel free to talk with me. You can call the Anderson Cancer Center in Houston. I am on the calling board as a urachal survivor. I'll share the road with you if it will help. Bless you all. DocHow are you doing? I had/gave an adeno carcinoma in the top of my bladder, it might ne an urachus. I had only an TURB 2 times, now today another white little strengh but the doctor want to wait and see over 3 months and check my urine. But it is never shown in urine. ( I am Dutch) I told the doctor that a RC is want I wisch, but he wants a PC with brachy radiation. But adeno doesn;t respond on that Please advice.  Gwen  Veggie747 Tue, 06 Apr 2010 00:00:00 GMT There seem to be a lot of us 'urachal adenocarcinomas' around! Hope you are all well.   Betsy Mae Betsy_Mae Thu, 25 Mar 2010 00:00:00 GMT Hello, I probably have urachal cancer, probably because they only can tell me for sure AFTER the surgery. It is an adeno carcinoma anyway. Twoo years ago, i had two Turbs not radical surgery which actually should be done which makes me a bit worried. Did you gave your surgery in Texas? Veggie Veggie747 Sat, 20 Mar 2010 00:00:00 GMT I was diagnosed with a mucinous urachal adenocarcinoma in March 2006. I had debulking surgery and I was cancer-free for 4 years thereafter. My last CT scan, however, in Feb 2010, showed signs of small traces of mucus reappearing on the surface of my liver and spleen. My consultant surgeon (Basingstoke Hospital, UK) did not appear to perceive this as urgent, and he has scheduled another scan in August in order to see if there is any major change. He explained the the most effective option for treating this form of cancer is the same as for appendix PMP, i.e. the Sugarbaker operation, but hard data is difficult to come by. Although Basingstoke has treated around 500 people with PMP over the last 10 years there has only been a handful of cases of urachal PMP. On the whole, my consultant is upbeat and he has filled me with confidence that the Sugarbaker op will knock this thing on the head. I found this article: Sugarbaker, Verghese, Yan & Brun (2008) Management of mucinous urachal neoplasm presenting as pseudomyxoma peritonei: http://tinyurl.com/5sf9ew   My full story is here: http://www.camsoftpartners.co.uk/pmpsurvivor.htm Graham_D Sat, 20 Mar 2010 00:00:00 GMT Hi shiv, I'm even newer to this game than you are, as I started having blood in my urine on 12/23/09 and was diagnosed by CT and cystoscopy on 1/19/10.  I had a partial cystectomy and umbilectomy, pathology showed (after three tries) a clear margin, but one of eight lymph nodes showed positive for cancer so it's stage IV and there are concerns about mets.  I had a Foley cath for nearly three weeks and am still working on increasing the time between bathroom trips!  My oncologist doesn't feel that radiation therapy is effective for urachal adenocarcinoma, and I tend to agree based on the research I've done.  Chemo is a possibility, but my oncologist also very wisely admits that she doesn't know much about urachal cancer, and wants an opinion from someone who does, so I've been very fortunate to receive a successful referral to MD Anderson in Houston for a consult next week.  You don't mention if there was any lymph node involvement in your case, or staging if they've given you any.  Treatment is, of course, up to you and your doctors, but I think your decision needs to be made based on whether there is any possibility of metastisis.  I've thought about this long and hard for myself, and while I'll take the recommendations into account, if I feel certain that there is no metastisis, I will take the "wait and see" attitude.  I would not want to limit it to annual tests, though!  More like quarterly - this stuff can be pretty aggressive!  I'm new on this site, but have been searching eagerly for others with this type of cancer - so glad I found this thread!  I have been wondering about all of those who posted in 2005-2009... are you all still out there??  Regards, lml ladymoonlite Sun, 21 Feb 2010 00:00:00 GMT Hi, I started getting symptoms (blood in urine) mid-september'09. After the initial few weeks of treating it as an infection then possible kidney stones it was confirmed through a CT scan & biopsies of my stomach area & bladder that it was a urachal tumor that was malignant. Surgery was done in Dec'09 & based on results, doctors were able to remove and contain it within the surgical margins... along with removing half of my bladder. Doctors have suggested 3 options at this point for me to consider 1. Do annual tests to observe possible recurrence 2. Treatment of Radiation therapy 3. Treatment of Chemotherapy Naturally I'm still in shock as to this entire thing, but I think in a positive way (not the "why is this happening to me" but "this is happening, what can I do about it"). I'm 34 years old, no previous indication of anything of this sort, other than the normal flu now & then. I'd love if anyone can assist me in better evaluating my 3 options. I live in the Caribbean & unfortunately because of the type of cancer, not much information is available about it. Thanks in advance.           shiv899 Tue, 16 Feb 2010 00:00:00 GMT In late Jan 2009 I began a week-long spell of vomiting and nausea.  After seeing my doctor three times, I was admitting to the hospital, where they informed me that a CT scan showed a slightly-smaller-than-golfball-sized growth below my navel.  I was told that it was almost certainly benign.  They scheduled a removal of it for early June.  The urologist was someone who advocated for it being looked at very carefully (and I'm very thankful for that).  I did all I could to learn about the meaning of the term "urachal cyst". The day after it was removed laparoscopically, I got a call from the nurse telling me that it was malignant, and that I'd be seeing an oncologist in about 3 weeks.  That seemed to be too long for me - a few phone calls and it was down to about a week to see the oncologist.   The cyst was wholly above the dome of the bladder, not attached to it, not involved with it - separate, it seems. It was stage 1, IIRC, mucinoid, adenocarcinoma.  The pathologist's report said the margins of the cyst looked good - the cancer cells had not reached the wall of the urachal cyst.  A followup CT scan and PET showed no signs of any other tumors, and my markers have been clear.   In terms of symptoms: *Severe nausea and vomiting, with heaving so hard that I was on oxygen for a while (unable to catch my breath).  This went on for roughly a week before I was admitted and the cyst was discovered as and incidental finding. (see comment below about whether or not the cyst itself was asymptomatic) *For about 7 years before the cyst was discovered, I had some vague urinary symptoms - seemed like an infection - discomfort - at one point I thought I might have kidney stone(s) - but nothing was found.   My family doctor (he is awesome, BTW) felt that the nausea & vomiting, the odd/vague urinary symptoms (that I'd had for several years) were likely unrelated to the cyst.  It is his guess that the cyst was asymptomatic, and that the vomiting and other symptoms where probably unrelated. The surgeon, the urologist and the oncologist seem less convinced of the cyst being asymptomatic.  Since we had no long-term imaging data of the cyst prior to it discovery, we don't know how fast it was growing at the time of its removal - over the 4 months between its discovery & removal it didn't seem to grow much, if at all.  They all have expressed some level of possibility that it could have caused or worsened some of the symptoms. I feel fortunate that whatever caused me to start with the week-long spell of vomiting actually may have saved or lengthened my life.  Whatever the case, I'm alive, I feel fortunate, I'm more aware of some things than I was before the diagnosis, and the experience has opened my eyes somewhat.       DavidP Mon, 25 Jan 2010 00:00:00 GMT My symptom's were unusual weight gain in abdomen, a slight ache in my gall bladder area , an incorrect "diagnoses of a left inguinal hernia"  at top of left leg , subtle fatigue , discharge in urine very infrequent lasted for 14 plus years and was dismissed as an infection , None of these symptoms were enough to make me stop and think something was very wrong Untill a cat scan showed very large tumor and ascities in excess of 25 lb's . Each person will experience some or all of these but it is a doctor who will determine the nature of disease and you should only have a doctor check you out . I am currently awaiting surgery to investigate and remove what appear's to be a return of disease . Scan seems to Indicate very small tumors so maybe this treatment will be more effective than the first round . Even though I have had no increase in tumor markers in 4 years and all levels are well within the "normal range" . It seems in my humble opinion low level disease does not elevate blood marker's ,Therefore a series of scans may be the best early detection, If anyone reading this knows of positive chemo treatment I would love to here from you !!!! There are good chemist's and doctors working on this stuff but a web site like this could be the place we can try to connect the dots....  So with the hope of breakthru soon , Good luck folks   Abovegrass Fri, 08 Jan 2010 00:00:00 GMT Hi All! Just to update you all. Having survived the chemotherapy and radiotherapy following my breast cancer it would now appear that I have lesions in my pelvic bone. So more radiotherapy and a 6 month course of Zometa to strengthen my bones. The problem is that as they cannot easily so a biopsy of the lesions we do not know if the secondaries are from the urachal tumour of the breast tumour. Rats!! Betsy Mae Betsy_Mae Thu, 07 Jan 2010 00:00:00 GMT On Dec 28, 2009 9:30 PM Stanley wrote: On Aug 15, 2009 12:00 AM Abovegrass wrote: First post on this forumI am 3.5 years from diagnosis, received complete debulk, intraperiteoneal heat therapy and have had a great quality of life returned to me !!!!! . After learning I had urachal cancer in 2006, I looked back and with the help of hindsight realized I had symptom's of this disease as far back as 1985 !!!. So  in my case it appears to have progressed slowly, Since my 14hr surgery in 2006 in Washington D.C, I had an ostomy reversal 1 year later and the surgeon removed 2 small lesions , labs show no CEA , or CA 19-9, abnormalitiesAlthough I was just told last week that my 6 monthly CT showed two small areas of probable cancer , As of today I have received no adjuvant therapy apart from the 2006 post operative intraperitineal thru the tenkoff catheters for three days following the first surgery.I am keenly interested in any chemo cocktails that I may research to see if new drugs have any success such as Irinotecan, or thalidimide, I understand M D Anderson patients may be receiving treatments such as these and would love to hear of anyones experience in this area of treatment as It appears that limited success has been achieved so far in this method .After reading these messages in this forum I realise we are a very rare but eager group willing  to self educate and share anything that will provide hope for a better treatment course, and future for us and our families that walk by our side as we go down the unknown path that lies ahead !!!!!! .Also if anyone knows of other forums or links which deal with Urachal Carcinematosis That would be helpfull also.My regards to all ,Steve Abovegrass.  I was diagnosed in September of 2007, since then I have been to M D Anderson about six times for analysis and recommendation of treatment.  Up to this point I have had three chemotherapy sessions. All three involved a different cocktail of chemicals.  Each one seemed to lower my tumor levels temperately.  Currently my marker levels are high and I am trying to figure out what is my next move.   I don't think that I am using this correctly I am trying to post onto this discussion. I am trying to connect with other female survivors of Stage IV Urachal Cancer. What have you gone thorugh and what kind of treatments? My mother in law was diagnosed with this last summer and has gone through 2 surgeries to remove her bladder, urachus, all female organs. She has also gone through 2 rounds of chemo one with radiation one without. She was cancer free 6 months ago but now is expierencing severe stomach pain and was brought to the hospital and they found several small nodules in the lining of her stomach. They are saying she will have to be on chemo forever...and I think she is not going to do this. She has been in the hospital for 2 weeks and has not been able to eat they are just pumping her full of drugs to keep her comfortable but aren't really doing anything to make her better. Any ideas or thoughts? hntrjmpr978 Sun, 03 Jan 2010 00:00:00 GMT On Aug 15, 2009 12:00 AM Abovegrass wrote: First post on this forumI am 3.5 years from diagnosis, received complete debulk, intraperiteoneal heat therapy and have had a great quality of life returned to me !!!!! . After learning I had urachal cancer in 2006, I looked back and with the help of hindsight realized I had symptom's of this disease as far back as 1985 !!!. So  in my case it appears to have progressed slowly, Since my 14hr surgery in 2006 in Washington D.C, I had an ostomy reversal 1 year later and the surgeon removed 2 small lesions , labs show no CEA , or CA 19-9, abnormalitiesAlthough I was just told last week that my 6 monthly CT showed two small areas of probable cancer , As of today I have received no adjuvant therapy apart from the 2006 post operative intraperitineal thru the tenkoff catheters for three days following the first surgery.I am keenly interested in any chemo cocktails that I may research to see if new drugs have any success such as Irinotecan, or thalidimide, I understand M D Anderson patients may be receiving treatments such as these and would love to hear of anyones experience in this area of treatment as It appears that limited success has been achieved so far in this method .After reading these messages in this forum I realise we are a very rare but eager group willing  to self educate and share anything that will provide hope for a better treatment course, and future for us and our families that walk by our side as we go down the unknown path that lies ahead !!!!!! .Also if anyone knows of other forums or links which deal with Urachal Carcinematosis That would be helpfull also.My regards to all ,Steve Abovegrass.  I was diagnosed in September of 2007, since then I have been to M D Anderson about six times for analysis and recommendation of treatment.  Up to this point I have had three chemotherapy sessions. All three involved a different cocktail of chemicals.  Each one seemed to lower my tumor levels temperately.  Currently my marker levels are high and I am trying to figure out what is my next move.    Stanley Mon, 28 Dec 2009 00:00:00 GMT Caught it during my annual physical exam (which I had missed for 2 years).  GP palpated (prodded) a mushy mass below my navel and above my bladder.  Also had occassional mucus and blood in my urine (hematuria ?), and sometimes abdominal pains which I thought were just digestive problems of growing old.  The CT Scan was the first real indication of a growth, and a cystoscopy + biopsy (snake a tube into the bladder and grab a sample) lead to a pathology report that confirmed it.  Hope this helps. JosephDreamcoat Tue, 10 Nov 2009 00:00:00 GMT I was wondering if you could tell me the symptoms you experienced before you were diagnosed. I am trying to find out information for a friend. yoster Tue, 10 Nov 2009 00:00:00 GMT I want to acknowledge everyone who has posted on this thread.  I have just been diagnosed, and am in the pre-surgery chaos.  My wife Karen was so encouraged and supported by your stories, it turned her whole day around.  I hope I can get some nitty-gritty details around here also, so I will check back shortly.  Must go see my GP today to build gameplan and team. JosephDreamcoat Mon, 09 Nov 2009 00:00:00 GMT Great to see Dr Songbird back again! I haven't posted for a while but I am still around, 100% fighting fit and cancer-free. My op was on 1 March 2006, so I am well into my 4th year of survival. At the age of 67 I am looking forward to my annual skiing holiday in Austria in January. My full story can be found here:http://www.camsoftpartners.co.uk/pmpsurvivor.htm Graham Graham_D Sun, 18 Oct 2009 00:00:00 GMT  On 9/8/2009 twostirish222 wrote: On 4/29/2005 Dr.songbird wrote:I want you all to know there is hope. In December of 2005, I will be 11 years cancer free. My diagnosis was stage 4 urachal cancer, and I had surgery in Chicago at the University of Illinois. The process was long and difficult - as you all may already know. Doctors at first thought I had a vernereal disease, even tho I kept telling them there was no chance. At the time I was a single dad with 4 children, ages 14 down to 4. The surgery took along time to recover from. I know how fortunate I am that they took a great deal of muscle (including navel, top of bladdere and intersceding muscle), as I have had no recurrance and did not need chemo. I have had additional surgeries, somewhat related to the first, but none have exposed more cancer.Please feel free to talk with me. You can call the Anderson Cancer Center in Houston. I am on the calling board as a urachal survivor. I'll share the road with you if it will help.Bless you all.DocMy first post here and I am glad I found this.  Like you when you were diagnosed I am 40.  I had a biopsy taken this past Friday and won't truly know if it's cancer until Thursday.  Either way I have a golf ball size tumor on the top of my bladder that will be removed this Monday. They will also take whats left of my umbilical cord and the top of my bladder. I was told I will be in the hospital 3-5 days and go home with a Catheterized. Which I am now. (more on this is a minute).  Can you tell me what I can expect after surgery?  As for me being catheterized now after my biopsy I stayed the night in the hospital and was released the next day.  They made sure my bladder was working properly. When I got home on the 2nd day all of a sudden I was not peeing. Apparently a clot formed and was blocking me from going. I went to the ER where they catheterized me.  I will make an appointment today to see my doctor. Hopefully he can take it out.  I will follow-up on Thursday if I have cancer.  Take care  My biopsy results came back today, and the news is fabulous. The tumor is benign. I still need to have it removed which is scheduled for Monday.  May god bless all!!      twostirish222 Thu, 10 Sep 2009 00:00:00 GMT Hang in there, I know this is scary but there is hope if it is cancer.  My husband just got a ct scan and we are waiting for the results.  He's been through so much already, I am praying there is nothing there. Please keep in touch and ask me whatever you want. Your in my prayers Basketballmom Tue, 08 Sep 2009 00:00:00 GMT  On 4/29/2005 Dr.songbird wrote:I want you all to know there is hope. In December of 2005, I will be 11 years cancer free. My diagnosis was stage 4 urachal cancer, and I had surgery in Chicago at the University of Illinois. The process was long and difficult - as you all may already know. Doctors at first thought I had a vernereal disease, even tho I kept telling them there was no chance. At the time I was a single dad with 4 children, ages 14 down to 4. The surgery took along time to recover from. I know how fortunate I am that they took a great deal of muscle (including navel, top of bladdere and intersceding muscle), as I have had no recurrance and did not need chemo. I have had additional surgeries, somewhat related to the first, but none have exposed more cancer.Please feel free to talk with me. You can call the Anderson Cancer Center in Houston. I am on the calling board as a urachal survivor. I'll share the road with you if it will help.Bless you all.DocMy first post here and I am glad I found this.  Like you when you were diagnosed I am 40.  I had a biopsy taken this past Friday and won't truly know if it's cancer until Thursday.  Either way I have a golf ball size tumor on the top of my bladder that will be removed this Monday. They will also take whats left of my umbilical cord and the top of my bladder. I was told I will be in the hospital 3-5 days and go home with a Catheterized. Which I am now. (more on this is a minute).  Can you tell me what I can expect after surgery?  As for me being catheterized now after my biopsy I stayed the night in the hospital and was released the next day.  They made sure my bladder was working properly. When I got home on the 2nd day all of a sudden I was not peeing. Apparently a clot formed and was blocking me from going. I went to the ER where they catheterized me.  I will make an appointment today to see my doctor. Hopefully he can take it out.  I will follow-up on Thursday if I have cancer.  Take care    twostirish222 Tue, 08 Sep 2009 00:00:00 GMT Hello everyone.My diagnosis of uracal cancer was given in August 2007.  I had a radical cystectomy removing my bladder and prostate.  A scan in December 2007 showed a second tumour in the psoas muscle and chemotherapy was advised and started in February 08.  It is now 15 months since my course of chemotherapy with Folfox was completed.  The most recent scan shows me to be still free of cancer. It feels a far cry from the suggestion that I would be dead in 6 months 2 years ago.  Inez and I are very grateful to Professor Sikora (oncologist) and Mr. Carr (surgeon) and to all fellow sufferers and their families for the support and encouragement.Best wishes to all of you. Geoff and Inez    Geoffrey_Paul Sat, 15 Aug 2009 00:00:00 GMT First post on this forumI am 3.5 years from diagnosis, received complete debulk, intraperiteoneal heat therapy and have had a great quality of life returned to me !!!!! . After learning I had urachal cancer in 2006, I looked back and with the help of hindsight realized I had symptom's of this disease as far back as 1985 !!!. So  in my case it appears to have progressed slowly, Since my 14hr surgery in 2006 in Washington D.C, I had an ostomy reversal 1 year later and the surgeon removed 2 small lesions , labs show no CEA , or CA 19-9, abnormalitiesAlthough I was just told last week that my 6 monthly CT showed two small areas of probable cancer , As of today I have received no adjuvant therapy apart from the 2006 post operative intraperitineal thru the tenkoff catheters for three days following the first surgery.I am keenly interested in any chemo cocktails that I may research to see if new drugs have any success such as Irinotecan, or thalidimide, I understand M D Anderson patients may be receiving treatments such as these and would love to hear of anyones experience in this area of treatment as It appears that limited success has been achieved so far in this method .After reading these messages in this forum I realise we are a very rare but eager group willing  to self educate and share anything that will provide hope for a better treatment course, and future for us and our families that walk by our side as we go down the unknown path that lies ahead !!!!!! .Also if anyone knows of other forums or links which deal with Urachal Carcinematosis That would be helpfull also.My regards to all ,Steve Abovegrass.   Abovegrass Sat, 15 Aug 2009 00:00:00 GMT Dear All:Dr. Songbird here. I have been out of the loop for several years - job moves, life in general... Hard to believe this thread goes back to 2005.Yes, I am still a survior and have had no recurrance since my initial surgery. Over the last few years I have had multiple surgeries for other problems, but thankfully not this one. As you may remember I was 40 when diagnosed; I will be 55 shortly and am so thankful. Each day is a blessing.I am still available to talk with/email any of you who are going through the process of dealing with urachal cancer or its aftermath. I remember how alone I felt, and having the option to talk with someone else who had survived would have been a help to me. I appreciate the number of people who have joined and kept this thread alive by sharing a shoulder, an ear, information, resources, and most of all hope. All of us are here to share the journey, the process. Today, I knew that it was important to come back and be a part of all of you. I've learned to listen to that voice. I will update my information through the Anderson Cancer Network/Center should you want to make contact in that way.May you enjoy each every moment to the fullest possible. You are not alone.My best, Dr. S.  Drsongbird Thu, 06 Aug 2009 00:00:00 GMT Thank you so much for responding.  My father is going to have another CAT scan so we can track the growth.  I will see if his Doctor is willing to give you husbands Doctor a call.  Good luck to you and thank you again.    Ever_Hopeful Sat, 09 May 2009 00:00:00 GMT  I'm so sorry for your father and your family.  My husband has this same type of cancer and it's spread to just about everywhere except his liver.  The only answer I can give you is to check around.  Our doctor is in Pittsburgh PA and is very knowledgeable.  I will be glad to give you his information.  Dr. Ahrendt at UPMC  412-358-3254. I believe this number is for his nurse Louise. She is amazing.  There are also some doctors with experience with this in Texas and I can't remember the name. I will email it when it comes to me.  If you need anything please don't hesitate to contact me.  I've been going through this for about 3 years now.  Good luck and God Bless.  On 5/6/2009 Ever Hopeful wrote:Hello, 'My father who is 73 was diagnosed with Urachal Cancer and it has spread to his liver.  His Doctor removed the mass that included his belly button, and seemed to think they "got it all" (except his liver).  We were told today by his Oncologist that they cannot treat the remaining mass on his liver and it is too large to remove or radiate.  We were told that Chemo was not effective in treatment.  My question is, has anyone else had this cancer spread to the liver?  I have read all of the messages posted, and many of them are several years old....has anyone had sucesses with treatment?  We were told today we have 6 months or a year...maybe longer, but that is unacceptable to me and I refuse to give up this early in the game.  Please, anything anyone can advise would be greatly appreciated.  We are so new to this journey.  Basketballmom Wed, 06 May 2009 00:00:00 GMT Hello, 'My father who is 73 was diagnosed with Urachal Cancer and it has spread to his liver.  His Doctor removed the mass that included his belly button, and seemed to think they "got it all" (except his liver).  We were told today by his Oncologist that they cannot treat the remaining mass on his liver and it is too large to remove or radiate.  We were told that Chemo was not effective in treatment.  My question is, has anyone else had this cancer spread to the liver?  I have read all of the messages posted, and many of them are several years old....has anyone had sucesses with treatment?  We were told today we have 6 months or a year...maybe longer, but that is unacceptable to me and I refuse to give up this early in the game.  Please, anything anyone can advise would be greatly appreciated.  We are so new to this journey. Ever_Hopeful Wed, 06 May 2009 00:00:00 GMT Hi Patty,in May 2007 I was diagnosed with Urachal Cancer. In Jun I was operated. I was real confused and disturbed for my, my wife, my 3 children. I had been reading statistic, medical news etc... I asked God for explanation, why me, how long etc and didn't heard any answer... I was real upset.In Oct 2007 my youngest child (my favorite), 3 weeks before his 2nd birthday wanted to play with window ant fell out. We are leaving on the 9th floor, more as 25 meters high, he fell on the earth w/o snow or grass or something else. And.... got only the small fruise. The doctors didn't found any other signs of this "fly". 3 weeks after we celebrated the birthday and most of my relations didn't know about this incident until now . The son is healthy, lively and quick-witted (I thing sometimes, to quick-witted :) ). Our life is not in the hands of doctors even less in the hands of statistician. We are in the hands of Lord Jesus Christ, there is good, because hi loves us and perfectly proofed it on the cross. He like to give us the best if we accept him as Lord and God, but hi let us to have what we real deserve if we don't accept him.I wish You Lords blessing for operation.I had my 2 years mark and still healthy, my son also. I hope this could support Your faith. Nothing is impossible for the God. I'll pray for You.Yury Yuriy Tue, 05 May 2009 00:00:00 GMT I have been reading through all this and for the first time feel like I am not alone.  I started this journey in December when I got a lump in my bellybutton that was painful.  300ccs of infection were drained and I was diagnosed with a urachal remnent.  I opted to have it removed thankfully.  It attached to the dome of my bladder and tested positive as cancer.  The original surgeon removed enough for a clear margin.  In my first set of scans they discovered spots on my lungs.  I underwent a Vats procedure on April 16 and they were NOT cancer!!  Thank God......  I am going in on Tuesday May 5 and have lymphnodes, more bladder, and some of my abdominal wall removed.  They tell em if they test clear..... I will not need chemo.  Fingers crossed.  Today has been good to finally...... finally see that I am not alone.....Patty Patty_in_NY Sun, 03 May 2009 00:00:00 GMT Hi Doc,I'm from Moscow, 36, male. Everybody, sorry for my language. My Russian is much better :).In May 2007 I’ve got blood in urin and 2 weeks after had biopsy, which showed moderately differentiated adenocarcinoma in the fundus of bladder in Bladder wall. Ca. 1,5 cm in diameter. In Moscow I didn’t found somebody who had some expirience with such a rare ilness like urachus adenokarcinoma. My dear frend and brother in Lord Jesus from Germany helped me to go to Germany, Siegen to Prof. Funke, who met such a case before. 14/06/07 he provided the surgery, which has no big difference of your, I’ve lost navel, 9 lumph nodes, 1/3 of bladder, and some fat. Nobady found the urachus, but the doctors decided that it is the urachal adenocarconoma because of kind and location. The final diagnosis was urachus carcinoma, low differentiated adenocarcinoma with singel ring component, max 1,5 cm in diameter + 9 helsy lumph nodes. Grade Sheldon III a. Since then, I had the full resourch (incl scintigraphy, CT, ultrasound, citoscopy with biopsy, X-ray of lungs etc) every 3 months for 1 year, after that said my doctor in Moscow that once in 6 months is enough. I feel my real well now, no sign’s of something bad. Last resourch was in Okt. 2008. I’m really gratefull to my Lord Jesus for my life not only for myself, but also for my children (now 11, 9 and 3 jears old) and my wife and parents. Thiss illness is for my bitter und severe, but real blessing and right lesson. There is important to understend that the life is not in the hands of doctors, doesn’t depend of illness, but is in hands of Lord Jesus. He had given himself for us with infinite love. The same love permit sometimes hard things … if neccesary….. Once will everybody understand this. Life is real treasury but to understand what for you life is and where you go is more precious. Duration of the life here is important, but not so much.IAC, there is must important thing in this life, to accept Him as lord and God. I wish you Lord’s blessing. Don’t lose the hope.   Yuriy Thu, 29 Jan 2009 00:00:00 GMT Just to add: I had a neobladder operation in August 2007 following diagnosis of an urachal adenocarcinoma of signet ring cell cancer. As all lymph nodes removed were clear I did not need chemotherapy. Sadly I now have breast cancer , signet ring cell again, and am currently undergoing chemotherapy. Betsy_Mae Mon, 26 Jan 2009 00:00:00 GMT I am approaching the 3-year survival mark. No MOAS surgery - just "standard" surgery, no follow-up chemo, and no re-occurrence.My tumour was a MUCINOUS URACHAL ADENOCARCINOMA, a variant of PMP (PSEUDOMYXOMA PERITONEI). I am currently an out-patient at North Hampshire Hospital, UK, one of the two PMP specialist centres in the UK. You can read my whole story here:http://www.camsoftpartners.co.uk/pmpsurvivor.htm I am a very fit and healthy 66-year-old.Graham Graham_D Tue, 21 Oct 2008 00:00:00 GMT Wow, so you've never had chemo? That's great. Count yourself VERY lucky as I'm sure you already do!   We only made it 5 years with no re-occurance, 7 years is strong!  Good luck and God Bless!  Basketballmom Tue, 21 Oct 2008 00:00:00 GMT  On 10/20/2008 Basketballmom wrote: That is so awesome to hear. Congratulations!   Can you tell me if your cancer was muscinous or referred to as adenocarcinoma?  That is what my husband has.  He has gone through 2 IPHC surgeries in the past 2 years and has had 2 scans since his last surgery back in March. No new signs of anything growing that they can see. He goes every 3 months right now.  He has had his spleen, gallbladder, part of his colon, and part of his small intestines removed. He was diagnosed back in April of 2002 as stage 4, what was your original diagnosis, what stage? Thanks for the info, and I'm truly glad for you and your family! God Bless! On 10/20/2008 john law wrote:My name is john l. And the anderson cancer center put me in touch with a cancer survivor back in 2001 whom i believe is dr.songbird.talking to him on the phone a couple of times back then gave me some hope when i had very little.my only symptom was when i urinated blood for one day only on fathers day 2001. I went to dr kennedy at hartford urology and was diagnosed with urachal cancer.at the time i was 49. I had my bladder, navel and prostate removed though they told me the cancer had not spread.the first year after the surgery i had ct scans every 3 months. The second year every four months.from then till last feb every 6 months.this past august was 7 years cancer free, and im now on a 9 month ct scan plan. I thank god for every day im alive and i pray that all who read this are as blessed as i have beeniI'm not sure if my tumor was muscinous or adenocarcinoma but it was a stage four. I was told that the margins were clean and that i was not a candidate for chemo though i wanted it any way. God bless  john_law Mon, 20 Oct 2008 00:00:00 GMT  That is so awesome to hear. Congratulations!   Can you tell me if your cancer was muscinous or referred to as adenocarcinoma?  That is what my husband has.  He has gone through 2 IPHC surgeries in the past 2 years and has had 2 scans since his last surgery back in March. No new signs of anything growing that they can see. He goes every 3 months right now.  He has had his spleen, gallbladder, part of his colon, and part of his small intestines removed. He was diagnosed back in April of 2002 as stage 4, what was your original diagnosis, what stage? Thanks for the info, and I'm truly glad for you and your family! God Bless! On 10/20/2008 john law wrote:MY NAME IS JOHN L. AND THE ANDERSON CANCER CENTER PUT ME IN TOUCH WITH A CANCER SURVIVOR BACK IN 2001 WHOM I BELIEVE IS DR.SONGBIRD.TALKING TO HIM ON THE PHONE A COUPLE OF TIMES BACK THEN GAVE ME SOME HOPE WHEN I HAD VERY LITTLE.MY ONLY SYMPTOM WAS WHEN I URINATED BLOOD FOR ONE DAY ONLY ON FATHERS DAY 2001. I WENT TO DR KENNEDY AT HARTFORD UROLOGY AND WAS DIAGNOSED WITH URACHAL CANCER.AT THE TIME I WAS 49. I HAD MY BLADDER, NAVEL AND PROSTATE REMOVED THOUGH THEY TOLD ME THE CANCER HAD NOT SPREAD.THE FIRST YEAR AFTER THE SURGERY I HAD CT SCANS EVERY 3 MONTHS. THE SECOND YEAR EVERY FOUR MONTHS.FROM THEN TILL LAST FEB EVERY 6 MONTHS.THIS PAST AUGUST WAS 7 YEARS CANCER FREE, AND IM NOW ON A 9 MONTH CT SCAN PLAN. I THANK GOD FOR EVERY DAY IM ALIVE AND I PRAY THAT ALL WHO READ THIS ARE AS BLESSED AS I HAVE BEEN.  Basketballmom Mon, 20 Oct 2008 00:00:00 GMT My name is john l. And the anderson cancer center put me in touch with a cancer survivor back in 2001 whom i believe is dr.songbird.talking to him on the phone a couple of times back then gave me some hope when i had very little.my only symptom was when i urinated blood for one day only on fathers day 2001. I went to dr kennedy at hartford urology and was diagnosed with urachal cancer.at the time i was 49. I had my bladder, navel and prostate removed though they told me the cancer had not spread.the first year after the surgery i had ct scans every 3 months. The second year every four months.from then till last feb every 6 months.this past august was 7 years cancer free, and im now on a 9 month ct scan plan. I thank god for every day im alive and i pray that all who read this are as blessed as i have been. john_law Mon, 20 Oct 2008 00:00:00 GMT Thanks, Ray. Our experiences are very similar. The hard core of my tumour was Stage 3, but it had not spread to my lymph nodes, so they were left intact. The mucous they found in my abdomen was low-grade, and my immune system appears to have kicked out the few bits that remained post-op.My oncologist and my consultant surgeon keep reminding me that PMP can come back, but they cannot say when - only that it could be months or it could be many years. I am now approaching three years PMP-free and enjoy excellent physical fitness at the age of 66 - I just booked my skiing holiday for January 2009.I am sorry to hear about your mother. My father died of cancer at the age of 77. It started in his bladder (which is why I got worried when my bladder began to give me problems) and then it spread everywhere. I was not PMP, however.Graham Graham_D Sun, 05 Oct 2008 00:00:00 GMT Alright, here is mine.I was diagnosed with urachus cancer end of 2006, 44 year-old. Symptoms were blood in urine. At the time I had read that blood in urine could be caused by kidney stones, so I dismissed this as not serious. Eventually, there was a few drops of pure blood coming out, so then I took this seriously. After a cystoscopy, CT scans, and other tests, it was found I had urachal cancer. Quite a shock at the time, since I don't smoke and had convinced myself that I wasn't going to get ill before at least 60, so I never really put too much thought in my own condition as a mortal being. Well, reality check.I was operated in April 2007, my doctor removed the urachus, top of the bladder, and the lymph nodes. Told me my cancer was stage 3 (or is it grade 3?), and the lymph nodes were clean. I have to undergo a CT scan, blood analysis and X-ray of the lungs every six months, for the first three years. Had my lastest results yesterday. So far all fine. For the first two checkups I couldn't control my anxiety waiting for the results, last one was way better.Reading through this message board though, clearly I am reminded that this rare cancer can come back. Something to keep in mind and a reminder I must not take anything for granted. I think I was falling in this mindset, again...My mother, 67, was diagnosed with small -cells lung cancer last month, with a metastasis on her cerebellum, causing her balance problem. Only symptom so far. Incurable. She has been smoker her whole life. The treatments are to extend life and to improve quality of life. She will receive her first treatment of radiotherapy next week.Thanks for sharing your stories,Ray tourlou Fri, 03 Oct 2008 00:00:00 GMT I've trawled the Web looking for cases similar to mine, but there don't seem to be many - and none identical to what I have experienced.I had a massive mucinous urachal adenocarcinoma removed from my abdomen, along with half my bladder, in March 2006. Post-op I was told by my oncologist that it was a variety of PMP and since then I have been attending a specialist PMP clinic at the North Hampshire Hospital, UK. I have had no further surgery, no chemo, and I am now fit and well (April 2008). The three CT scans I had post-op showed the small amounts of PMP jelly that were left over in my abdomen shrinking and then finally disappearing. I am now considered to be in remission and I'm not scheduled for a further CT scan until February/March 2009. Am I unusual? The reason I ask is that almost every case history of urachal cancer that I read tells a more pessimistic story. My complete story is here:http://www.camsoftpartners.co.uk/pmpsurvivor.htm Comments welcomed. Graham_D Thu, 24 Apr 2008 00:00:00 GMT Hello, i was glad to read about your sister. my wife has urachal cancer about a year and a half ago and had surgery to remove the cartilage. She did not receive any chemo treatment as they felt they got it all. 2 months ago she had severe pain and MRI's and CT scans showed that she had a tumor on her spine. The cancer had metasticized from the urachal. She is receiving radiation to try and shrink it. The doctors in Toronto know very little as to how to treat this cancer. I have read on the internet about Dr. P and am interested in his experimental treatment. It has been almost 2 years since you sent your message. Could you tell me how successful this new drug was in treating your sister? teacherjane Fri, 21 Mar 2008 00:00:00 GMT  On 5/3/2005 Linda l wrote:DR. songbird, Hello, I am a 55 year old female who was diagnosed with urachal adenocarcinoma, June 03. It had a spread to my ovary, and sigmoid colon. After surgery and 4 weeks rest,I started chemo treatments of Gemzar and Cisplatin,that were very agressive.Six months of treatment and testing and scans, my Dr. found me cancer free. It has been over one year and I have remained in remission. I am scanned etc. every5-6 months. I would like to find out if your cancer was adenocarcinoma,you did not mention that it was. Also if yours was diagnosed at stage 4, but no metastisis? Thank you for the info, wonderful to hear!! Linda L.I was curious how hard those chemo agents are to take. My dad is 77 and weakened from fighting this in severe pai all year. they kept doing cystoscopies and telling him there was nothing wrong. he had 2 Neg CT's that now we have found the tumor going into the pubic bone on. Where exactly is the Urchal? What does that mean?  Rosemary woolfer Thu, 06 Dec 2007 00:00:00 GMT Hi.  How are all of you in treatment doing?Any news or breakthroughs? One_step_at_a_time Fri, 30 Nov 2007 00:00:00 GMT  On 1/30/2006 Quaestor wrote:Dr Songbird - I am a new member on the board today (1-30-06). I've read a bit of this thread and appreciate what you have to say. I was diagnosed with urachal cancer in November, 2004, soon after I had turned 37. Initial treatment was surgery to remove a grapefruit-sized tumor. The doctors found small "seed" tumors spread throughout the abdominal cavity, ranging in size from popcorn kernels to an inch in diameter. They had to take a little of the bladder but luckily nothing was inside any other organs. (Perhaps that's why it took so long to find - the only real symptom I had was severe abdominal pain for about a month.) I've been on chemo since then, and luckily I am doing quite well. I have been told that I am a permanent chemo patient. My oncologist consulted with the local "Tumor Board," MD Anderson, and the Mayo Clinic, and the consensus was to treat mine like colon cancer. I had a Port-o-Cath implanted and get the drugs every two weeks. (Oxaliplatin at first - yuck - and 5-FU; now my dose has been cut way back and I get only the 5-FU.) I've had about five CT scans over the last year and all have been clear, but no MRIs. And the doctor tracks the level of a marker chemical - CEA ("carcenoembryonic antigen"). The levels have always been at the lowest level the test can measure. Having chemo every two weeks, except for periodic breaks (I'm told 3-4 times per year, for a vacation, for example), seems like a bummer...but it beats the alternative! I am down for a couple of days after each treatment, so I sit at home and catch up on the cooking shows. When I was getting the higher doses of chemo I had some nerve and skin problems but those are gone now. This cancer is not fun but there are a LOT WORSE things that could have happened to me! In the back of my mind I hope for a miracle pill, but in the meantime I try as much as possible to live my life as I did before. I have two kids to raise (3 and 12) and a house to pay off, after all! (And a truck we bought last summer...I have every intention of meeting my financial obligations!) I felt down when I was sitting in the hospital after my surgery, as to be expected, but I decided that there is a certain percentage of cancer patients who are survivors, and that I would be among that group. If there is anyone else who has had or is having a similar treatment I'd love to hear from you (or anyone else in our exclusive "urachal cancer" club)! WarrenHi QuaestorI came across one of your postings today and found your story to be alot like mine. I really need to know how you are doing. I am 36 and I have 3 boys and I also was told I would be a permanent chemo patient. I am currently on carboplatin and taxol every three weeks ,just had a cat scan and will get results nov. 1. What drug is working for you? the first drug I was on did not work cisplatin and gemcitabine. I hope you can give me some hope to hang on to. dasiy bear Daisy_Bear Tue, 23 Oct 2007 00:00:00 GMT Dear all,I am new in the message board and would like to get your opinion about the following:I will try to write it as clear as possible (in fact, I am Belgian and my mothertongue is French... it is quite difficult for me to use medical vocabulary in English)Beginning of 2006, the doctors found out my mom - aged 56 then - had urachal adecarcinoma on the dome of her bladder. She went through surgery to remove it, together with her belly button. At that time, they thought tumor was restricted to this adenocarcinoma. But soon after surgery, they found out she had "frog belly" / "ascitis" in her abdomen. She then went through 6 months of chemo which ended in October 2006. Since then she had 3-month scan for control which showed all no trace of anything...About one week ago, she again faced severe pain in her abdomen. She went to the hospital where the doctors made 1 echography, 1 scan and 1 cystoscopy showing nothing. Urologist advised her to contact her oncologist to know if it might be a post-chemo symptom or if he is able to find out where this pain is coming from.Did any of you (or relatives) face such a pain to be described as a severe spasm leading to almost fainting?Thanks for your time reading me. I already thank you for your answer if any.Wish you all the best for each of you,Nathalie   peanuts1972 Mon, 22 Oct 2007 00:00:00 GMT Hi, I am new to this site.I am reading your story with interest.My husband has been surgically treated for a recurrance of urachal carcinoma, now in the lymph node. How is your sister doing now?  I am thinking of calling Dr. Petrylak.Would really appreciate your response.Very best wishes. One_step_at_a_time Sun, 26 Aug 2007 00:00:00 GMT  On 6/7/2006 Ccdgal wrote:Subject: Urachual Adenocarcinoma Screen Name: UrachualknowerDate: 6/5/2006 Msg. #: 1 of 1Hi I've read alot of entries from urachual survivors and the newly diagnosed. My sister was diagnosed with metastatic urachal cancer in 5/02. 4 years ago, she was offered no treatment options since none existed except surgery to remove a 7 cm tumor. 2 years ago, she had a reoccurence in her pelvic lymphnodes and was given a 4 month regime of irnotecan and avastin. The doctors were very hopeful that the avastin had worked but, this march (another 2 years) she had another reoccurence in her pelvic lympnnode. This time, it is not sugerically removable. Her dr. at Columbia Pres. is putting her in a trial for a brand new drug that he feels will benefit her. I urge all newly diagnosed patients to contact Dr. Dan Petrylak at Columbia University in Gentiuroligical cancer to get info on this trial (it is not a chemo but rather an anti-antigensis drug similar to avastin with realtively little side effects) and use it to challenge the opinions you've rec'd to date. I saw others using a chemo pill protocal and plan to challenge why we are not going in this direction. As an FYI -- the trial starts 6/21. Dr. P is also associated with the top urachual surgeon world-wide (Dr. Olosson) and developer of the bladder pactch so complete removal of the bladder is not necessary. Since I'm new to this site, please forward this message around. To the newly disgnosed....THIS IS NOT, NOT, NOT, NOT the death sentance that it may seem to be at first glance of the research. My sister has had a GREAT quality of life, happily attended her children's weddings and MBA graduations, purchased a NJ shore home and even babysits for my 4 and 6 year olds. That is not someone who even with 2 surgeries and 1 chemo regime is not living life. Please let your loved ones know the success stories. I only wish I had found a few 4 years ago to tell my sister.I am new to the message board and am seeking information for my husband.  Can you update me on the work of Dr. Petrylak at Columbia University and the antigensis drug that you reported here?  Do you have any contact details?Thanks for your reply.  I am also gathering information on the most effective chemo treatements and trials.  Thanks in advance. I appreciate any news. One_step_at_a_time Sun, 26 Aug 2007 00:00:00 GMT  On 8/1/2007 Basketballmom wrote:Hi Christine,Thanks for writing me back.  He goes in on the 2nd for the port.  Did it hurt?  How does it feel now?  He's so tired of needles and everything else!  I feel so bad for him.  He went to a homeopath the other day too.  She didn't have a whole lot to tell him but did recommed an IV drip of Vitamin C.  I read some things on that and it sounds pretty good.  Have you tried it?  I guess it's supposed to really help with the side effects of chemo and boost your immune system.  I think he might try it.  He will start chemo on the 6th and they are using 5 FU and cisplatin.  I hope he doesn't get sick.  You guys have been through sooo much, I can't imagine how you must feel.  My husband doesn't like to talk about it so it's hard for me to gauge how he's doing with it all.  I know that denial works best for me!  Sounds selfish but it works.  I don't know how else to handle it.  PMS doesn't help either!  Well, I have to get back to work and stop crying!  I look forward to talking with you!Thanks again!  Just wanted to let you know that the port is alittle painfull at first but nothing compared to major surgery! I was just so glad to get one finally because they nurses would have such trouble finding a vein and they could spend up to a half an hour poking me with needles. The cisplatain is hard on the veins and it burns, so it will be less painfull for your husband to have the port because he won't be able to feel it going in.I have tried herbal-E tonic before chemo and I was told that the vitamine E will work againts what chemo is trying to do, so I stopped. People would never know I was chemo by looking at me, until this new drug made my hair fall out which is alot easier for summer.I know what you are talking about with the denial I have it everyday too!wishing you all the best with the porta-cath talk soonChristine Daisy_Bear Thu, 02 Aug 2007 00:00:00 GMT Hi Christine,Thanks for writing me back.  He goes in on the 2nd for the port.  Did it hurt?  How does it feel now?  He's so tired of needles and everything else!  I feel so bad for him.  He went to a homeopath the other day too.  She didn't have a whole lot to tell him but did recommed an IV drip of Vitamin C.  I read some things on that and it sounds pretty good.  Have you tried it?  I guess it's supposed to really help with the side effects of chemo and boost your immune system.  I think he might try it.  He will start chemo on the 6th and they are using 5 FU and cisplatin.  I hope he doesn't get sick.  You guys have been through sooo much, I can't imagine how you must feel.  My husband doesn't like to talk about it so it's hard for me to gauge how he's doing with it all.  I know that denial works best for me!  Sounds selfish but it works.  I don't know how else to handle it.  PMS doesn't help either!  Well, I have to get back to work and stop crying!  I look forward to talking with you!Thanks again!   Basketballmom Wed, 01 Aug 2007 00:00:00 GMT Dear Shelly    so gald you found the time to write, I want to help you and your husband. I am on Chemo and have been on chemo since april and It is not as bad as some people expect it to be. I too thought it would be making me alot sicker than it does, I have 3 kids that I need to take care of so all of my family where there for me. I had 3 cycles of Gemcitabine which the doctors refer to as a gentle drug,and cisplatin which is makes you feel sick for about a week ( iam not actually sick you just feel sick). But the doctors have come along way to find drugs that help control how sick you feel. My whole family is socked by how I am handling my treatments ,but I was a healthly 35 year woman before all this happened to me last year.I too have a porta-cath and it makes it much easier for me and the nures that have to find a vein, because after having a few treatments your veins get small and really hard to find.I had a ct scan to see how  I was responding to this chemo and the cat san showed that one lymph node and grew alittle but all the other spots had stayed the same. That told the doctors that it might have been working and had stopped so it was time to change the type of chemo.I now get taxol and carboplatin which is alot easier to handle , I am alot lesssick then the first drug. But with out the antinausa drugs that I take before and after I would a lot sicker. The doctors have come along way in helpingpeople get through chemo with little side affects.  I was so glad that the doctors are will to try to find a chemo that will hopefully kill this cancer and I will try any thing they will give me . Alot of peolpe use chemo to control pain that they are having from their cancer. I had a sharp shooting pain going right up my butt! It was terrible!! I worriedthat the cancer had spread some more, but since I have started chemo I don't have the pain anymore and my doctor told me that chemo could help take way this pain and she was right.I can't tell how much I think your husband should at least try chemo and see if it is right for him. The doctors might not have a crure for cancer but they have come along way to find good drugs to help you get through chemo with little or no side effects. My doctors have been in contact with MD anderson for advice with my treatments as well and I live in Canada.I am more afraid of cancer then I am of chemo!!!I feel that the doctors would not offer chemo if they felt it would not benefit you in some way. I was told that radation was not an option and theywon't even try it. I hope that I was of some help , I don't want your husband to think chemois terrible and isn't worth the time to spend or waste 18 hours of his life toonly make him feel sick. I feel it's worth a shot to at least try it!Please keep in touch I want to know how everything is with your husband and I hope I was of some help with telling you what I have exprienced.ChristineOn 7/28/2007 Basketballmom wrote: Hi Christine, sorry I haven't written in awhile. Just trying to deal with all that's going on.  How are you doing?  Anything new going on?My husband is doing ok.  He had a ct scan about a month ago and of course there is still cancer left.  Which we knew there would be.  I found out it's in his lymphnodes which I didn't know before.  I heard once it spreads there it can go all throughout your system.  Haven't done any research on it though.  We've found a local doctor to do chemo with and they are checking with some doctor at MD Anderson to see what type of chemo they recommend.  They want to put him on an 18 hour drip, which means he'll have to have a port put in his chest.  They wanted to get started last week but it all came so fast.  They really want him to start the chemo asap so it doesn't spread anymore but he's reluctant.  I don't know what to tell him to do.  He thinks he can live another couple of years without chemo and atleast be semi healthy and alot less sick.  Not sure how I feel about that,  kinda scary to think he might do nothing and be gone way to soon.  I've looked into some alternative medicine, but most of what I found is a diet of stuff I don't think anyone can live on!   The site is called cancertutor.com if your interested.Well, there's our update!  I pray your doing well, please reply when you feel like it.Shelly   On 6/25/2007 Daisy Bear wrote: On 4/4/2007 Basketballmom wrote:Hi, I hadn't seen any new posts in awhile and figured everyone had given up on the site.  Sorry to hear you didn't get your surgery.  My husband came home the first week of March and things seemed to be going ok the first few weeks.  He threw a large blood clot to his right lung last week, the doctor said if he would have waited one more day he would probably be dead.  He's also down 39 pounds.  He's very weak and I'm not sure what to do next.  It's awfully watching him everyday struggle.  I keep hearing over and over again to keep the faith and keep your spirits up.  I know it's hard but hang in there.  Please keep me posted on your results.God Bless, my prayers are with you.Shelly   ShellyJust thought I would keep in touch to see how things are going for your husband. I can't imagine how hard it has been for the both of you. If you feel up to replying to this message that would be great. I know that you can get to a point that you just don't want to talk about it anymore. I feel sometimes that I just don't even want to talk about cancer anymore , it has already taken up enough time in my life.Love to hear from youChristine   Daisy_Bear Tue, 31 Jul 2007 00:00:00 GMT  Hi Christine, sorry I haven't written in awhile. Just trying to deal with all that's going on.  How are you doing?  Anything new going on?My husband is doing ok.  He had a ct scan about a month ago and of course there is still cancer left.  Which we knew there would be.  I found out it's in his lymphnodes which I didn't know before.  I heard once it spreads there it can go all throughout your system.  Haven't done any research on it though.  We've found a local doctor to do chemo with and they are checking with some doctor at MD Anderson to see what type of chemo they recommend.  They want to put him on an 18 hour drip, which means he'll have to have a port put in his chest.  They wanted to get started last week but it all came so fast.  They really want him to start the chemo asap so it doesn't spread anymore but he's reluctant.  I don't know what to tell him to do.  He thinks he can live another couple of years without chemo and atleast be semi healthy and alot less sick.  Not sure how I feel about that,  kinda scary to think he might do nothing and be gone way to soon.  I've looked into some alternative medicine, but most of what I found is a diet of stuff I don't think anyone can live on!   The site is called cancertutor.com if your interested.Well, there's our update!  I pray your doing well, please reply when you feel like it.Shelly   On 6/25/2007 Daisy Bear wrote: On 4/4/2007 Basketballmom wrote:Hi, I hadn't seen any new posts in awhile and figured everyone had given up on the site.  Sorry to hear you didn't get your surgery.  My husband came home the first week of March and things seemed to be going ok the first few weeks.  He threw a large blood clot to his right lung last week, the doctor said if he would have waited one more day he would probably be dead.  He's also down 39 pounds.  He's very weak and I'm not sure what to do next.  It's awfully watching him everyday struggle.  I keep hearing over and over again to keep the faith and keep your spirits up.  I know it's hard but hang in there.  Please keep me posted on your results.God Bless, my prayers are with you.Shelly   ShellyJust thought I would keep in touch to see how things are going for your husband. I can't imagine how hard it has been for the both of you. If you feel up to replying to this message that would be great. I know that you can get to a point that you just don't want to talk about it anymore. I feel sometimes that I just don't even want to talk about cancer anymore , it has already taken up enough time in my life.Love to hear from youChristine  Basketballmom Sat, 28 Jul 2007 00:00:00 GMT Dear Craig,I am not sure if you remember me, but  sent you an email a few years ago regarding my mother with Urachal cancer.  She has been dealing with this for two years, and and was cancer free for awhile, but now it has come back again.  We (My sister, and brother) are all trying to deal with this again, as we have also just lost our father to cancer.  She has been dealing with so many different doctors, and sickness, that it is heartwrenching.  We are trying to do the best we can to keep her spirits up, but it doesn't seem to be working, since this has been something that we haven't had to physically deal with.  I know that in one of the emails that you sent me, you were willing to speak with her, and try to give her the support that we can't, since you have dealt with this personally.  If that is possible, please let me know, and I will give you her number.  Thank you so much for your time. Julie Lanki Sat, 14 Jul 2007 00:00:00 GMT  On 4/4/2007 Basketballmom wrote:Hi, I hadn't seen any new posts in awhile and figured everyone had given up on the site.  Sorry to hear you didn't get your surgery.  My husband came home the first week of March and things seemed to be going ok the first few weeks.  He threw a large blood clot to his right lung last week, the doctor said if he would have waited one more day he would probably be dead.  He's also down 39 pounds.  He's very weak and I'm not sure what to do next.  It's awfully watching him everyday struggle.  I keep hearing over and over again to keep the faith and keep your spirits up.  I know it's hard but hang in there.  Please keep me posted on your results.God Bless, my prayers are with you.Shelly   ShellyJust thought I would keep in touch to see how things are going for your husband. I can't imagine how hard it has been for the both of you. If you feel up to replying to this message that would be great. I know that you can get to a point that you just don't want to talk about it anymore. I feel sometimes that I just don't even want to talk about cancer anymore , it has already taken up enough time in my life.Love to hear from youChristine Daisy_Bear Mon, 25 Jun 2007 00:00:00 GMT Hi, I hadn't seen any new posts in awhile and figured everyone had given up on the site.  Sorry to hear you didn't get your surgery.  My husband came home the first week of March and things seemed to be going ok the first few weeks.  He threw a large blood clot to his right lung last week, the doctor said if he would have waited one more day he would probably be dead.  He's also down 39 pounds.  He's very weak and I'm not sure what to do next.  It's awfully watching him everyday struggle.  I keep hearing over and over again to keep the faith and keep your spirits up.  I know it's hard but hang in there.  Please keep me posted on your results.God Bless, my prayers are with you.Shelly    Basketballmom Wed, 04 Apr 2007 00:00:00 GMT  On 1/18/2007 Basketballmom wrote:My husband was diagnosed 5 years ago with urachel cancer, they found the first tumor on his bladder, not sure how big it was.  They removed 20% of the top of his bladder, no chemo or radiation was done becuz the doctor thought they got good margins and they said there was nothing to chemo.  He was checked every 3 mos then 6 months they every year.  They found a tumor in his soft tissue above the pubic area, about 3 inches long.  The doctor said it was a re occurance and it had metasized (sp) so they labeled him stage 4. The cancer has spread to the peritoneal lining (abdomen lining)and it's called seedlings or studding.  The oncologist said there was no treatment except that he may be able to do a phase one trial.  Which is not a treatment.  Some people respond good to these trials but they don't leave me with a good feeling!  My husbands cousin found a website that talked about IPHC, if you google it, it should come up.  It's a heated chemo procedure done for appencile (sp) type cancers.  It's called the Mother of all surgerys (nice), there is actually a video on line that shows part of it.  The will go in and "debulk" or remove all the seedlings in his peritoneal lining then sew him back up and put 2 canulas in his stomach and run heated chemo through his belly to try to kill whatever cancer that they couldn't see. The hospital stay is 2 weeks and the recovery will be hard from what the doctors are saying. It's a 10 hour surgery! Please keep in touch and let me know how it's going for you! Don't worry about the questions, I'm pretty new to all this too.   Dear basketballmomI hope your husband was able to get through his operation . I haven't heard anything from you thought I would check up on your battle. mine has been not very positive but I hope it will be soon! I didn't get the surgery on feb.19 they opened me up to find the cancer had spread and they would not be able to get it all with surgery. I will start chemo on march 22 they will try a bladder cancer treatment first and if that doesn't respond then they will use bowel treatments. I don't know what to think about this any more .I think I little of has given up! I can't believe that I wish that I could have had the surgery because before the surgery I was so not wanting it! I didn't want to have my bladder removed and now I wish I could have had it.I hope that chemo works and maybe then I they can get the bladder out I think its the only way to keep it from returning.  Hope to hear from you soon Daisy_Bear Thu, 15 Mar 2007 00:00:00 GMT My college roommate has urachal cancer and I saw your information regarding your sister and the good responses she is having from Dr. Petrylak's treatment.  Would you or your sister be willing to contact my friend?  She is traveling in NJ/PA from North Carolina and does not have access to a computer.  She has a long distance cell number 828-964-5406 and her name is Donna Bauer.  If you or your sister would prefer not making a long distance call then could you provide a name and number where either of you can be reached and she will call you.  If you would prefer making a collect call, let me know that and I will notify Donna.Thank you for the encouraging news about your sister.  We are all very excited.  Donna is being treated at Sloan Kettering and we have been somewhat discouraged lately.  Your web information has been so uplifting.Linda N.--- Message edited by CancerCompass staff: for personal protection, email address and phone number removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Roommates Mon, 29 Jan 2007 00:00:00 GMT  On 6/7/2006 Ccdgal wrote:Subject: Urachual Adenocarcinoma Screen Name: UrachualknowerDate: 6/5/2006 Msg. #: 1 of 1Hi I've read alot of entries from urachual survivors and the newly diagnosed. My sister was diagnosed with metastatic urachal cancer in 5/02. 4 years ago, she was offered no treatment options since none existed except surgery to remove a 7 cm tumor. 2 years ago, she had a reoccurence in her pelvic lymphnodes and was given a 4 month regime of irnotecan and avastin. The doctors were very hopeful that the avastin had worked but, this march (another 2 years) she had another reoccurence in her pelvic lympnnode. This time, it is not sugerically removable. Her dr. at Columbia Pres. is putting her in a trial for a brand new drug that he feels will benefit her. I urge all newly diagnosed patients to contact Dr. Dan Petrylak at Columbia University in Gentiuroligical cancer to get info on this trial (it is not a chemo but rather an anti-antigensis drug similar to avastin with realtively little side effects) and use it to challenge the opinions you've rec'd to date. I saw others using a chemo pill protocal and plan to challenge why we are not going in this direction. As an FYI -- the trial starts 6/21. Dr. P is also associated with the top urachual surgeon world-wide (Dr. Olosson) and developer of the bladder pactch so complete removal of the bladder is not necessary. Since I'm new to this site, please forward this message around. To the newly disgnosed....THIS IS NOT, NOT, NOT, NOT the death sentance that it may seem to be at first glance of the research. My sister has had a GREAT quality of life, happily attended her children's weddings and MBA graduations, purchased a NJ shore home and even babysits for my 4 and 6 year olds. That is not someone who even with 2 surgeries and 1 chemo regime is not living life. Please let your loved ones know the success stories. I only wish I had found a few 4 years ago to tell my sister.I hope you could help me ? I read you story on the thread and found it a bit like mine as I too had a 7cm tumor removed and half my bladder along with it. You didn't say if your sister had half or any of hers removed. The reason I ask you this is because I had 2 CT scans after my surgery and they show the bladder at the site of the surgery is thickening and that is when My doctors told me the whole bladder should come out and almost every female part as well.I am 35 years old and I live in Canada and I go to the top cancer center there. You also talked about a bladder patch what is that? Hope you respond my surgery is booked for feb. 19 Daisy_Bear Mon, 22 Jan 2007 00:00:00 GMT So sorry to hear about your husbands up coming surgery it sounds just awful I can't imagine being told that. I hope you can be strong for him I know that when people around me are strong I can be strong too! you have to pull all the positive thoughts and fight it together. I was once on a web site called the belly button club , I thought I fit into this group but when I read their stories I soon learn't it was much different. They talked about a surgery they called shake and bake it sounds the same as you talked about in your message. Have you been to this message board ??I also go on another message board for bladder cancer called wwww.blcwebcafe.org which is very helpful for dealing with the baldder issues. When is your husbands surgery? I am having mine Feb.19 I hope to hear from you soon Daisy_Bear Fri, 19 Jan 2007 00:00:00 GMT My husband was diagnosed 5 years ago with urachel cancer, they found the first tumor on his bladder, not sure how big it was.  They removed 20% of the top of his bladder, no chemo or radiation was done becuz the doctor thought they got good margins and they said there was nothing to chemo.  He was checked every 3 mos then 6 months they every year.  They found a tumor in his soft tissue above the pubic area, about 3 inches long.  The doctor said it was a re occurance and it had metasized (sp) so they labeled him stage 4. The cancer has spread to the peritoneal lining (abdomen lining)and it's called seedlings or studding.  The oncologist said there was no treatment except that he may be able to do a phase one trial.  Which is not a treatment.  Some people respond good to these trials but they don't leave me with a good feeling!  My husbands cousin found a website that talked about IPHC, if you google it, it should come up.  It's a heated chemo procedure done for appencile (sp) type cancers.  It's called the Mother of all surgerys (nice), there is actually a video on line that shows part of it.  The will go in and "debulk" or remove all the seedlings in his peritoneal lining then sew him back up and put 2 canulas in his stomach and run heated chemo through his belly to try to kill whatever cancer that they couldn't see. The hospital stay is 2 weeks and the recovery will be hard from what the doctors are saying. It's a 10 hour surgery! Please keep in touch and let me know how it's going for you! Don't worry about the questions, I'm pretty new to all this too.    Basketballmom Thu, 18 Jan 2007 00:00:00 GMT  On 1/18/2007 Basketballmom wrote:Daisy Bear, sorry to hear about your diagnosis and welcome to the thread.  I'm not sure who is still on this board anymore, seems like a couple of people are still emailing back and forth.  I am new to this site also.  My husbands story is a few pages back I think.  I wish you luck and my prayers.  Have you heard or talked to anyone about IPHC?  Look into it, not sure who all it helps, but I'm hoping my husband will benefit from the surgery he is having in february.  Also, please get a 2nd opinion about having your bladder removed, you never know who else out there may feel you have other options.God BlessI was so glad to hear from you! I don't know what IPHC is so you will have to fill me in on that. But I feel very confident with my doctor ,I go to the largest cancer center in Canada and feel they are really taking into account the size of my tumor which was 7 cm. I had my first surgery in a local hosptial and everything seem to go really smooth until the pathology report came back with positive lymph node. thats when they sent me Toronto for possible radiation or chemo that was back in sept. It has taken this long to come to the conculsion that the bladder has to go. I have seen eight differrent doctors from urologist, chemo to radiation and they all took my case to the tumor board and from my 2 recent CT scans feel it would be best that the bladder be taken because it is showing thickening at the site of the first surgery. my new doc. didn't think my first doc got clean enough margins and it should have been taken at the first surgery. This is a very bad cancer they tell me and they feel this would give me the best out come. How is your husband doing ? what kind of surgery is he having ? how big was his tumor? sorry for all the questions I just don't anyone else with this cancer. I think we can help each other through this. Daisy_Bear Thu, 18 Jan 2007 00:00:00 GMT Daisy Bear, sorry to hear about your diagnosis and welcome to the thread.  I'm not sure who is still on this board anymore, seems like a couple of people are still emailing back and forth.  I am new to this site also.  My husbands story is a few pages back I think.  I wish you luck and my prayers.  Have you heard or talked to anyone about IPHC?  Look into it, not sure who all it helps, but I'm hoping my husband will benefit from the surgery he is having in february.  Also, please get a 2nd opinion about having your bladder removed, you never know who else out there may feel you have other options.God Bless Basketballmom Thu, 18 Jan 2007 00:00:00 GMT I hope that my doctors here in canada can have acess to these new drugs that you all talk about. I was diagnosed with urachal cancer in 09/06 and had surgery to remove half of bladder and had some lymph nodes involed. I have had CT scans in nov. and Jan. doc's think my bladder in showing thickening which they are very concered about and recommend total bladder removal. They will try to get as many lymph nodes as possible because first doc only took one from each side, with the right coming back positive. Hopefully after my surgery in feb. and when I recover they will have some miracle chemo drug that they can zap me with. I hope you will respond back as I understand. We all know this is hard to find with this rare cancer . I am 35 years old with 3 boys that keep me going every single day.On 1/16/2007 Jimnow4 wrote:It is so great to hear that Jane is responding to the treatment she is getting.I just discovered that the Urachal cancer I was diagnosed with 4 years ago has spread to my lungs (see message 52 on this board). Sorry for the repeat of this message but I wanted to make sure you were notified by email in case you are not checking this site often.Can you provide any additional information on the clinical trial that Jane is part of? I'm hoping that maybe I could get enrolled to control the spread of the tumor to my lungs.Thanks,jim   Daisy_Bear Tue, 16 Jan 2007 00:00:00 GMT It is so great to hear that Jane is responding to the treatment she is getting.I just discovered that the Urachal cancer I was diagnosed with 4 years ago has spread to my lungs (see message 52 on this board). Sorry for the repeat of this message but I wanted to make sure you were notified by email in case you are not checking this site often.Can you provide any additional information on the clinical trial that Jane is part of? I'm hoping that maybe I could get enrolled to control the spread of the tumor to my lungs.Thanks,jim Jimnow4 Tue, 16 Jan 2007 00:00:00 GMT Craig, I'm not even sure you are on this message board anymore but I have some questions for you as you are the longest living urachal survivor I have found.  AMEN!My story is on the board somewhere, so I won't bore anyone with the details again but here is my question:  did your cancer spread to any soft tissue?  My husband had the same surgery as yours 5 years ago and we thought he was "cancer free" but they found a mass in his soft tissue, so just last month they took out part of the muscle in his stomach area.  The problem is the doctors found "studding or seedlings" in the peritoneal cavity.  I was wondering if you ever had the same diagnosis.If anyone else has had the same thing please respond.  My husband is going to Passavant Hospital in Pittsburgh in February for IPHC.Thanks for listening.    Basketballmom Tue, 16 Jan 2007 00:00:00 GMT  On 1/16/2007 Jimnow4 wrote:I'd like to thank everyone that has contributed to this message board. It is very encouraging to hear stories from folks that have this rare type of cancer.I was diagnosed with urachal cancer 4 years ago at age 43. They removed the tumor along with part of the bladder 4 years ago with clear margins.2 years ago, small spots in my lungs were found on follow-up CT-scans. They thought they were due to chronic infection because they have been growing very slowly, sometimes not at all, and also because I am on immuno-suppresion because of a kidney transplant 18 years ago.A lung biopsy was performed to confirm if the spots were infection or cancer  and I just found out that the lung spots are due to spread of the urachal cancer after all.I am hopeful because the spots are growing slowly (the largest is still less than 1.5 cm after 2 years) and because they have not spread to any other part of my body.However, I am also very concerned knowing that the cancer has spread and could begin growing more quickly.I have not yet been through any chemo or radiation, because the thought up until now has been that the cancer was clear.Does anyone on this board know of a physician in the pacific NW (Seattle or Portland) that specializes in this rare form of cancer?I've heard many references to MD Anderson in Houston and Dr Petrylak at Columbia. It sounds like there have been some encouraging progress in treating this type of cancer even after it has spread.Any advice on referrals in my area or on reaching Dr Petrylak would be greatly appreciated.My thanks and prayers are with all of you.jimHi Jim, sorry to hear your news.  I am from Ohio and we traveled to Pittsburgh to talk to some doctors over there because we got no hope from the Cleveland Clinic.  We spoke to Dr. Bartlett at UPMC, I know it's not quite the area you were looking for but it's a little closer than Texas.  I'm sure someone on this message board will probably have someone closer for you.  Good luck and God Bless.  Please keep us informed, if you feel like it.   Basketballmom Tue, 16 Jan 2007 00:00:00 GMT I'd like to thank everyone that has contributed to this message board. It is very encouraging to hear stories from folks that have this rare type of cancer.I was diagnosed with urachal cancer 4 years ago at age 43. They removed the tumor along with part of the bladder 4 years ago with clear margins.2 years ago, small spots in my lungs were found on follow-up CT-scans. They thought they were due to chronic infection because they have been growing very slowly, sometimes not at all, and also because I am on immuno-suppresion because of a kidney transplant 18 years ago.A lung biopsy was performed to confirm if the spots were infection or cancer  and I just found out that the lung spots are due to spread of the urachal cancer after all.I am hopeful because the spots are growing slowly (the largest is still less than 1.5 cm after 2 years) and because they have not spread to any other part of my body.However, I am also very concerned knowing that the cancer has spread and could begin growing more quickly.I have not yet been through any chemo or radiation, because the thought up until now has been that the cancer was clear.Does anyone on this board know of a physician in the pacific NW (Seattle or Portland) that specializes in this rare form of cancer?I've heard many references to MD Anderson in Houston and Dr Petrylak at Columbia. It sounds like there have been some encouraging progress in treating this type of cancer even after it has spread.Any advice on referrals in my area or on reaching Dr Petrylak would be greatly appreciated.My thanks and prayers are with all of you.jim Jimnow4 Tue, 16 Jan 2007 00:00:00 GMT     Hi, I just finished reading through this email thread and could not figure out how to add a comment regarding this type of cancer.  Hopefully this will make it to the right site!   My husband was diagonosed with urachal cancer at 39.  The cancer was only attached to the dome of his bladder and he had surgery to have it removed.  He didn't have chemo or radiation, the doctor said he had good margins and there was nothing to chemo.  He had been cancer free for 5 years!  About a month ago he went in for his yearly checkup and they found a mass in his stomach muscle.  He had surgery on 12/20 to remove it.  When the doctor came out only 2 hours after the surgery began I was elated, I figured it was no where else, especially since all his scans came back clean.  The doctor told us that he had studding or seedlings all thru his peritoneal cavity and that it was stage 4.  I was shocked.  I didn't really see anyone else here have that same diagnosis but I think some sound the same.  The oncologist at the Cleveland Clinic basically said there is no treatment, just a "phase 1" trial. Which didn't really give up any hope.  One of our family members found a hospital in Pittsburgh that is doing a procedure called IPHC.  They will go back in his peritoneal cavity and get out all the "seedlings or studding" they can then use heated chemo and apply it to the affected areas and then run it thru his system.  The surgery takes 10 hours but they think it might knock the cancer back and hopefully stop the growth of the "seedlings".  Just wanted to know if you've heard of it, no one on this site has talked about it.  I've heard they are doing the procedure at Sloan Kettering and also at MD Anderson, which it sounds like some of these people are going there.Sorry to take up so much time but just wanted to know your thoughts.Thanks for listening   Basketballmom Mon, 08 Jan 2007 00:00:00 GMT Hi Melissa, This is great news!!! I'm very happy for you both and I will continue to keep you in my prayers. Please tell Jane congratulations from me for both her daughter and this update. Still nothing new on my end and hopefully it will stay that way. My best always. Derrick Monsoon71 Wed, 29 Nov 2006 00:00:00 GMT Hey Everyone Good news, Jane (on the experimental treatment out of Columbia) continues to do great on the experimental pill she is taking. She is on day 170 + and is feeling fit, looking good and we found out Monday that the cancerous lymphnode in her pelvis continues to shrink. Her daughter is getting married in 2 weeks and she is loving life. Last March when she was told about this 3rd reoccurrence, we could not even imagine this day nor how great she would look and feel for it. There is HOPE.....NOBODY IS ALLOWED TO LET THERE DOCTORS GIVE UP ON THEM!!!!!! Jane's sister Melissa Urachualknower Tue, 28 Nov 2006 00:00:00 GMT Hello, I am going through the process of just being diagnosed with this cyst. I have a cycstocomy next week to take a sample and get some answers. I had no symptoms for this, it was discovered on CT scan for another unrelated issue. I am assuming because the CT showed the glow of the cycst that it is probably malignant. That is what my Dr. thinks. I am going to lahey clinic in Boston. Anyone been treated there? I'm not sure how to find a Dr. in the are that has done the surgery before if if I need to go to that stage. Until I read some of the blogs on this site it appeared from the documents on the web that the prognosis was about 5 years for survival. That was pretty gloomy. Is that not correct? Any information would be useful and appreciated. Thanks Jayne_w Fri, 20 Oct 2006 00:00:00 GMT thank you so much for the information. our oncologist is out of town next week but i will talk to Dave about all of this tonight and we will get started on our research. maybe we can give dr P a call next week and see what kind of info we can find out. I will definitely keep you updated. you have been a great help; i sincerely appreciate all of it. susan g David7164 Fri, 29 Sep 2006 00:00:00 GMT Susan Glad to help and I wish you the best. Dr. Dan Petrylak can be reached by calling Columbia Presbyterian Hospital and calling his office directly (he is a gentiurological oncologist). Also, your oncologist will most likely have heard about him since he is internationally known for coming up with curative protocals for various cancers like prostate. I'll put his phone number on the blog but due to the rules, it maybe blocked out .. 212 305 1731. You can also ask for Gary Shelton -- he is Jane's oncology nurse so if you can't get to Dr. P directly, give Gary a call and tell him your story. If you need to come to NY, let me know, I'm in NJ and very close to Columbia. I'll certainly help you out. Melissa Urachualknower Fri, 29 Sep 2006 00:00:00 GMT Hi Melissa, Your messages have given me so much hope and that is the main reason i have chosen to respond to this string. How would i get in touch with this dr. P? I have already googled him today and will read up more on him tonight when i get home. I would definitely make the trip if Dave could be part of the new trial; is that coming up in December? David is the most positive person i know and for him to give up is really bad. They have only tried one chemo on him; that is not enough!the chemo drugs he was on are cysplatin ( a bad one), gemsar, and 5FU. He actually did 2 cycles, which was every 21 days and he did that 4 times. His hair was falling out so we just had to shave it off, but even that didn't bring him down. He has always been healthy and then all at once this thing happened. I am so happy that your sister is doing so well and i only hope that one day we can find that too. Thanks again for responding to my message; you have really brightened my day! David7164 Fri, 29 Sep 2006 00:00:00 GMT Hi Susan I'm glad we connected. Do not give up. There are alot of treatments he can give a try even while travelling and living life. Please go on-line and contact Dr. Petrylak at NYC Columbia Presbyterian. My sister had her 3rd lymph node reoccurence and is now on this experimental pill that has held her cancer at bay and has caused no side effects. In addition, had this not worked, the Dr. was going to put her on Avastin, irinotecan, and 5FUL. If you google on urachal adencarcinoma and irinotecan, you will see that many patients with urachal are getting a daily irinotecan pill. Also, go to the following article about this............ www.medscape.com/medline/adstract/16601395 Many folks on this site have called Dr. P about his treatment, either call him or have your oncologist call him. Mention you got the info from this blog as per Melissa (Jane's sister). He'll know who you are talking about. Also, this trial that Jane is in, is starting a new round with a higher daily pill dosage. I would definately give it a try at least you know that it is working for one urachual patient. If that is too experimental for you, go with the irinotecan pill -- again, at least you know it worked for someone. Lastly, Dr.P had mentioned to my sister about a regime that reduces adenos by 33% though he did not name the drug. One last thing, there is a Dr. in Boston (Dana Farber Hospital) called Dr. Oh, he recently told a patient on this blog that they think there might be something curative in Japan but not available in USA. Let me know what comes. I plan to go to Japan and am willing to check this out. Keep going....we will find out how to beat this, I just know it!!!!!! Jane's sister Melissa Urachualknower Fri, 29 Sep 2006 00:00:00 GMT Hi Melissa and fellow urachal survivors, My husband David, 42, was diagnosed last June05 with urachal cancer after the urologist found a bladdar tumor while investigating complaints of back and side pain and blood in his urine. He did surgery and removed the urachus and did a partial cystectomy and was pretty sure he got it all. Not even a year, in January of 2006, they saw something on the PET Scan and thought it was scar tissue. When they repeated in 3 months it had doubled in size to about 5cm and they knew it had returned. We consulted an oncologist here (we are from Pearl River, La) and he told us to immediately go to MD Anderson, which we did. They put us on an aggresive chemo for 2 cycles of 5 days in a row every 21 days. We did that twice and the tumor had no response, it didn't shrink, but it hasn't grown. He also has growth in the lymph nodes around the area of the bladder and abdomen. Since then it seems as though every one has given up. They(MD Anderson) took us off of the protocol and are telling us to plan trips (we all know what that means). Our local oncologist is a little more understanding. He told us to take a break and then we will start on more chemo and take it one day at a time. He said his goal is to keep Dave here as long as possible. I don't feel like we have tried enough. I don't want to take a trip, I want to stay and fight this thing! I am sorry to unload on everyone like this but if anyone has any input, i'm all ears. We are only 42 and not ready to throw in the towel yet and we have a 12 year old daughter to raise! Thank you so much for listening. Sincerely, Susan G David7164 Fri, 29 Sep 2006 00:00:00 GMT Hey everyone As you may remember from my earlier entries, Jane was diagnosed with her 3rd reoccurence in March. Since then she went into an experimental trial (drug has no name at the time) and after 100 days on the medicine (with no side effects), her cancer has not grown, spread and appears to be shrinking -- though ever so slightly. They are beginning a new trial with this drug and it will double the daily pill dose Jane is currently taking. I encourage anyone who has tired things that failed to take a look at this protocol. We'll know more in December when hopefully after another 3 months on the meds, the tumor will conclusively shrink. Regards Urachualknower Thu, 28 Sep 2006 00:00:00 GMT Hey Everyone and Derrik Thanks for checking on Jane and for passing along the great news that things checked out okay for you. I'm sorry however that you had to go thru the emotion of "high alert". At least you heard from the top dr. that it was not cancer!!!! As for Jane, she had a scan on Wed. after 80 days on the medicine and we found out today that the tumor is still 2.5 cm and the cancer has not moved anywhere else. This has been great news. In addition, she has not had one side effect from the meds. She drove on the beach often over the summer, saw shows in A/C, went out to dinner every night and of course, entertained my 2 kids all the time since we stayed at her beach house most of the summer. She looks great and it seems that the only time we forget she has cancer is when we are with her. We are still in a bit of a holding pattern regarding what it means that after 5 1/2 mos. the cancer has not grown or spread but also, did not shrink -- which you would assume if the meds were working. Dr. P is looking at the scans further and having close measurements done of the tumor and will let us know more on Monday. Of course, no additional bad news has become our good news!!! Jane's daughter is getting married in December so it looks like we'll all be there with bells on!!!! We'll keep you in our prayer that you continue to get great news and hopefully, one day I can let everyone know that this medicine is truly working. Hope to speak to you soon Melissa Urachualknower Fri, 15 Sep 2006 00:00:00 GMT Hi Melissa and all, I hope everyone is doing well. Any updates on Janes treatment? I received my first set of scans last week and spent the weekend on "high alert." I saw the CT scan report on Thursday and it identified a cystic mass roughly 4.5 cm in size near my bladder. All I could think was "the cancer is back!" I was glad to find out Tuesday afternoon that the cyst is more than likely a Urinoma or a Lymphocele. According to Dr. Petrylak, this in not a recurrence. Phew!!!! So my question to everyone is how common is it to have a Lymphocele or Urinoma post cystectomy and lymphandectomy? I tried looking for info on pub-med but couldn't filter the returned results. Thanks and my prayers to all. Derrick Monsoon71 Wed, 13 Sep 2006 00:00:00 GMT Hi Melissa, Sorry I have not had a chance to get in touch with you by phone or email. It's been a bit crazy for me trying to re-engage my life and get back to work (difficult first week but it's getting easier). Yes, it was good to hear that you had a nice conversation with my wife although I'm sorry I missed your call. The story of how you found this site is great and I'd love to hear it first hand. I'm also very glad to hear that Jane seems to be responding to her new treatment. I will continue to pray for her and send my best wishes to your whole family. It's certainly nice to hear of new experimental drugs that have success and come with few side effects. If this is the one, we will all be blessed. Speaking of new drugs, I was recently in Boston at Dana Farber meeting with Dr. Oh (just another opinion) and he indicated that there has also been some success in Japan with another new drug (not yet in the US). I believe it was something that started with an F but I can't remember the name. At my next visit, I'll ask again and post it to this string. Thanks so much for thoughts and prayers. My first round of scans begin next week so needless to say, I'm a bit anxious. I don't believe they'll find anything but uncertainty is always creeping around. I just had my first colonoscopy and results were all good there. A few nodes and a polyp were biopsied but the pathology report was clear. FEW!!! I'll post as my scan and cystoscopy results are available. As an FYI, I'll continue to forward all my test results to Dr. Petrylak and Dr. Oh. I'm thinking that keeping 2 of the best doctors involved will be a good idea if this ever returns. Thanks again and my thoughts, prayers, and best wishes to you and everyone facing this journey with us. Derrick Monsoon71 Sun, 20 Aug 2006 00:00:00 GMT Joseph and Wife - You offend no one. We are all in this together: your questions are real, the cancer is real, the "unknown" is very real. As you probably have been reading, there just isn't a lot written on Urachal cancer. When you speak with suvivors, each of us has faced a different set of treatments, with the possible exception of those who have seen the same Doc. One statement you made leads me to ask more: what does "found so late" mean to you/your doctor? A "stage" of the disease (the cancer's invasion or spread to adjacent/distant tissues in the body) would be helpful to you as this would give you a marker to measure the extent of disease as well as the success of treatments. Some types of urachal cancer are adenocarcinomas, as your wife's has been labeled. Additionally, the cancer is looked at in other ways (like staging). Encapulated means all of the cancer is completely encased in/by a tumor, and there is no evidence any cancer has spread outside of the tumor. The tumor has also not penetrated the bladder wall or other organ. One of the facts I learned from research is that urachal cancer is a primary cancer, not typically a cancer seed that has come from a different source of cancer in the body. Surgeons and pathologists are usually able to tell on looking at tissue/tumor samples. The doc I had in Chicago almost 12 years ago had seen and operated on several urachal cancer patients. He had seen the most of any doc I could find through telephone/internet search. The doc was straight up with me. He indicated that the cancer was primarily encapsulated, but that it had penetrated the top portion of the bladder. He drew a picture for me of what the surgical procedure would look like, and explained to me about clear margin (area of tissue beyond the diseased that shows no sign of cancer). He indicated that he would be agressive in the surgery, and he was. I'm very glad. He did not plan for me to have chemo or radiation and I have had none. My surgeon explained the original purpose of the urachus, and explained what the surgery would include. He chose to remove all muscle/tissue that was formed adjacent to the urachas or which originated from the same cell structure which included my navel and the tissue that connected downward to the bladder. He removed the top of the bladder, not the whole bladder. My cancer was listed as a stage III/IV, probably because its so rare it's hard to classify accurately. I have a remarkable (to me) vantage point on this process after almost 12 years. When I look in the mirror, I do see some healty scaring. I no longer have a naval (something that I needed to explain to my 4 children who were very young at the time). I also no longer see life through the big "C" of Cancer. At year three I felt a lot of relief since I had passed the most frequent recurrance time; at year five, I celebrated the moment with my family; at year seven, my doc to me I didn't need to see him any longer as I was clear; at year 10, I stopped talking about the cancer, choosing to share only with those of us that share the same walk. May it be the same for your wife. Ask whatever you need to. We'll share what we have. Craig Drsongbird Wed, 02 Aug 2006 00:00:00 GMT On July 27th 2006, my wife went in to surgery to remove a 2 cm tumor on her bladder. It was found in a CAT san, then verified by a scope insertion in the urethera. She went into surgery for removeal, but could not get it all out, stopped because of possible bladder rupture. Follow-up and biopsy show not bladder cancer, but doc said adenocarsinoma, thought and read as much as could, did not like what I was reading, seemed as everything was very bad news to me. Doctor called me this morning to tell me he thought maybe Urchal. Started research on this and found your site. Promissing messages here. We are scheduled for OBGYM appt 8-3-06 and oncology 8-9-06. I know there will be surgery, but from what I have read this is a real nasty cancer since it is so late when detected. Her CAT scan showed a small area, but now really worried as I have learned this can be from another area. Any words of comfort. Will keep this site updated as we go through this. Nothing mentioned on survival rate or expectancy. I guess everyone is different. I am new to this so I hope I do not offend anyone. Joseph Gmnot56 Tue, 01 Aug 2006 00:00:00 GMT Hey Derrik As your wife most likely mentioned, she and I had a very nice discussion. I hope your first day of work was great and not to tough. Today Jane got the results of her PET/CT after being on the experimental (and yet to be named drug). It appears her cancer is responding to it. Since April of this year, has cancerous lymph node has not grown in size nor has the cancer spread any place else. That is really great news since her infected node is sitting in a place that is causing her no problems. She is continuing with the regime for the next 28 days and will be scanned again in Sept. That is when the dr. will get to see if she is responding for sure and perhaps see the beginnings of a push back on the node. AS for Jane, she is thrilled given that this drug (in pill form every other day) has not caused any symptoms thus far (not even hair loss). Good news for all urachal patients. If you hear of anyone whose cancer is further advanced than Jane's and is looking for something to do, have them contact me. I think there is still room in the trial. Meantime, I hope you remain "cancer freeeeeeeeeeeee"!!!!!!! But I'll keep you up to date anyway --- just in case Jane is the break thru we are all looking for!! Our thoughts and prayers are with you for your continued healthy recovery. Melissa Urachualknower Thu, 27 Jul 2006 00:00:00 GMT Hi Jane, Melissa and all, Sorry it took a few days for me to post this but I've been busy making additional calls and doc appointments. Jane, it was unfortunate that we did not meet each other at Dr. P's office but we should try to touch base via email and or phone (since we now have each other's contact info). It is, however, wonderful to hear that your treatment is going well and that you are doing great. I'm very inspired by your success and positive attitude and hope and pray that you continue down the same path. Best of luck and health to you with the new trial. Hopefully it will work wonders and you wont need to move on with a new group of drugs (I think Platinum is the last one you referenced). I'm doing all right but still a bit overwhelmed by this new development in my life (still learning the ropes I guess). As for my appointment, it went ok but I wish there was more that could be done in regards to an adjuvant treatment. Given that my post op pathology looks good and there are no clinical signs of cancer left, the current plan is to monitor me with scans, cystoscopy, and blood work every three months for the next two years and then every six months for the following five years. I am very happy about my condition but, I asked repeatedly about supplements that may help reduce the likelihood of recurrence and neither oncologist gave me any advice other than to eat a healthy diet and reduce my fat intake. Dr. Petrylak indicated that I have a 50% chance of recurrence and I'd like to reduce that as much as possible. Here's the odd thing though, my local oncologist said I have a 10% chance of recurrence. ?????? Since my appointment, I've been searching for someone to help me put together a Vitamin regimen but it's very difficult to get any opinions. Can you let me know how you designed yours? I have now scheduled an additional appointment with a doctor at Dana Farber just to see whom he agrees with and what his ideas for observation/treatment are. Hopefully I'll hear the 10% again and be offered some advice for adjuvant treatment options. Jane and Melissa, I'll send you a separate email or call and we can talk more in depth. My best wishes and prayers to all, Derrick Monsoon71 Thu, 29 Jun 2006 00:00:00 GMT Hey Derrick This is Melissa's sister Jane. I thought we might bump inot one another last Thurday but I had a early appointment and you were later in the day. I had to go back on Friday for tests and Gary told me you met and gave me your telephone number which I will pass along to Melissa when she returns from vacation. Of course Gary could not tell me how things went but I hope your visit was worth your trip. I don't know whether melissa told you but I started a trial last Wednesday. I think Petrylak wanted to give this drug a shot while it's available and I have a lymph node that they can measure for it's effectiveness. He did come in to say that at the recent "Cancer conference" there is a new group of chemo drugs that they found to definitely shrink adeno carcinoma tumors by 33 o/o. Dr. P. seemed to be delighted with this news and told me if this trial showed no results we would move on to this new group. I only caught the name Taxol and I think one of the others was platin(?) Anyway both gary and Dr. P were happy to have a next step. It's all heading in the right direction for us! By the way I feel great.... I hope all is going well for you. jane Ccdgal Tue, 27 Jun 2006 00:00:00 GMT Hi Melissa and all, I have contacted Dr. Petrylak and am scheduled to see him as a follow up to my recent surgery to remove my origin tumor (recovering well at 2 weeks post op). Thank you so much for putting his name on this message board. At this point, I'm hoping he'll have some good answers for me since my Surgical Urologist seems to think most chemo treatments or radiation have limited success. On a second note, my Urologist has met Dr. P and strongly agrees that he is the one to see in the northeast for this type of cancer. I'm very glad to finally have a renouned Oncologist in my corner. My appointment is next week and I'll post again with his comments and treatment plan. Thank you again and my prayers and best wishes to you all. Derrick Monsoon71 Wed, 14 Jun 2006 00:00:00 GMT Memphis - I'm not a medical doctor and would not want to guess at something that would directly effect something so precious as a human life. In several of the posts in this chain, individuals have talked about their positive experiences in certain locations. They indicate that they have found docs that talk to them in a straight-forward, honest way. The doctor I chose had done the operation before- successfully. Other wanted to help but had not attempted or succeeded. I'll hope that you can find a doc that can be honest about condition and chances for surgical success. There are so many things to consider that a good doc is the only one who can take all of the information available and make and informed decision. I wish the best for all of you. Dr. Songbird Drsongbird Sat, 10 Jun 2006 00:00:00 GMT Hi Craig, My 81 year old mom was diagnosed with adenocarcinoma of the urachus just recently. She is borderline diabetic and anemic. What are her chances for surgery? Would anyone know how fast this kind of cancer invades other organs? Her bladder looks clear and so are her pelvic lymphnodes. Thanks, memphis Memphisbelle Fri, 09 Jun 2006 00:00:00 GMT Lucy... I'm doing OK. My surgery consisted of an en bloc resection so that included removal of my belly button, urachal ligament, urachas and dome of bladder all in one piece. It was pretty ugly. I got to see pictures of it. The path report put me in Stage IIB. I had clean margins and clean lymph nodes (7). I decided not to have chemo because from what I have read it doesn't really do to much. The oncologist left it up to me. I'm not sure if my tumor was encapsulated because I had a transurethral resection for what was thought to be bladder cancer one month before the final resection. It was in my bladder and the urologist was happy to see that the tumor had not developed tenticles that went down the wall of the bladder. He was very pleased at how clean and large my margins were. He went to look at the slides himself. I go for my first scan on the 16th of this month. I'm praying that this was the end of this thing. The next few years will tell. I understand that if I can go the next two years without a recurrence that the chances of the cancer coming back go down greatly. I pray everyday that this is the case. I don't know if I will be having any more children. My husband has decided that he wants to end our marriage. We have so many other things going on in our lives, I think the stress is too much right now. So as you can imagine...I'm really worried about a recurrence due to the circumstances. Currently we are still living together, but the situation is tense. Our daughter though is happy, healthy and always smiling. She is my savior. Keep in touch. Anna Annac Thu, 08 Jun 2006 00:00:00 GMT Hey Derrick - I was 40 when diagnosed, and goin on 12 years clear. I would think that your age is of great benefit. I was told at the time of my surgery that I was very young to be diagnosed at 40. Bluntly, I glad they found it regardless of my age - had they not, the other option is clear. I just read an email from another survivor relative - I think it is reply # 28 in this string. The information she shares of new treatment and new sugical solutions are truly tremendous. Please know that I will pray for you. My whole family will pray for you, and keep on praying. As I siad in an earlier message, I have no doubt that is what brought me through a very dark and difficult chapter in my life. Please feel free to contact me whenever you need to read a supportive message. Keep me informed. I'll share as much of my recovery and getting on with life as you care to read. My best for daily strength... Craig (Dr. Songbird) Drsongbird Wed, 07 Jun 2006 00:00:00 GMT Hi Anna, I was diagnosed during the birth of my son in 2003. I had subsequent surgery - parital bladder resction, urachal ligament, lymphnode, and belly button removal. So far, my CT scans and cystoscopes have been normal. This past year, I started seeing a physician at memorial sloan kettering in nyc and he recommended a PET scan before we tried for another baby. I'm 36 years old and my son will be 3 years old this September. I think I have an idea of what you must be going through. I was wondering how you are doing and what kind of surgery you had. I just hope and pray that your tumor was encapsulated and there were to lymphnode spread. Hang in there. Lucy Havehope Wed, 07 Jun 2006 00:00:00 GMT Subject: Urachual Adenocarcinoma Screen Name: UrachualknowerDate: 6/5/2006 Msg. #: 1 of 1Hi I've read alot of entries from urachual survivors and the newly diagnosed. My sister was diagnosed with metastatic urachal cancer in 5/02. 4 years ago, she was offered no treatment options since none existed except surgery to remove a 7 cm tumor. 2 years ago, she had a reoccurence in her pelvic lymphnodes and was given a 4 month regime of irnotecan and avastin. The doctors were very hopeful that the avastin had worked but, this march (another 2 years) she had another reoccurence in her pelvic lympnnode. This time, it is not sugerically removable. Her dr. at Columbia Pres. is putting her in a trial for a brand new drug that he feels will benefit her. I urge all newly diagnosed patients to contact Dr. Dan Petrylak at Columbia University in Gentiuroligical cancer to get info on this trial (it is not a chemo but rather an anti-antigensis drug similar to avastin with realtively little side effects) and use it to challenge the opinions you've rec'd to date. I saw others using a chemo pill protocal and plan to challenge why we are not going in this direction. As an FYI -- the trial starts 6/21. Dr. P is also associated with the top urachual surgeon world-wide (Dr. Olosson) and developer of the bladder pactch so complete removal of the bladder is not necessary. Since I'm new to this site, please forward this message around. To the newly disgnosed....THIS IS NOT, NOT, NOT, NOT the death sentance that it may seem to be at first glance of the research. My sister has had a GREAT quality of life, happily attended her children's weddings and MBA graduations, purchased a NJ shore home and even babysits for my 4 and 6 year olds. That is not someone who even with 2 surgeries and 1 chemo regime is not living life. Please let your loved ones know the success stories. I only wish I had found a few 4 years ago to tell my sister. Ccdgal Wed, 07 Jun 2006 00:00:00 GMT Hello Craig and all, My name is Derrick and I am a 32 yr old male who has been recently diagnosed with Urachal Adenocarcinoma (May 27, 2006). I have also just recently undergone surgery to remove the origin tumor (including margin), the dome of my bladder and multiple lymph nodes. First, let me say that it is sooooooo good to hear survivor stories for this type of rare Cancer. My beginning research led me to believe that my diagnosis was a death sentence. However, through more research and discussions with my doctor regarding post op pathology, I am quickly realizing and believing that this is definitely beatable. Given that I am in upstate New York near Albany, does anyone know of a good Oncologist in the area? Also, additional information on recent treatments would be great. I have yet to meet with anyone other than the Urologist that performed my surgery. Lastly and most importantly, I'm hoping I can ask you all for information, support and prayers as my treatments (or lack there of) begin in the near future. I am scheduled for a bone scan and chest CT later this week so the doctor can eliminate concern that this has spread. Preliminary prognosis is good but as you are probably all aware, I am still quite nervous given the limited experience with this type of Cancer. Thank you to all and please know my thoughts, prayers and best wishes go to all of you and your families. Derrick Monsoon71 Tue, 06 Jun 2006 00:00:00 GMT I understand the need for confidentiality, so the contact info I've supplied has been edited out. Sorry that I forgot about that. The methodof contacting MD Anderson is a good one. Let them know that you have urachal cancer and would like to talk to a survivor. I believe I might be the only one on the response team who is from the same metropolitan are that we are. University if Illinois at Chicago is where i had mine done. The surgeon is a world famous soft tissue surgeon who has done the most of these surgeries I have heard of with winning results. It will probably be easier for you to have the surgery and follow up in Chicago as traveling with a little one when you are still recovering would be very hard. The doctor I had was the head of "surgical oncology" at the University of Illinois - Chicago clinic/College of Medicine. Perhaps you have already seen him as your referral. He was the best of all worlds for me - in Chicago, a surgeon, an oncolgist, and a bunch of survivors. I have been through several insurance companies during my medical treatment. In my experience, asking for (yet another even after two...)AN ADDITIONAL OPINION is usually approved. Additionally, I was able to keep the surgical oncologist who examined me even though he was outside of my insurance plan. I persuaded them to consider the fact that he had done the identical surgery many times with positive results - not just a bladder surgery, but a urachal cancer tumor requiring a bladder resection. The doctor the plan advocated was a urologist who understood the procedure but had not performed the specific cancer including surgery before. The insurance company's decision was swift and positive. I learned that it was important for me to talk directly (by phone) with my claims representative or the supervisory staff who make the coverage decisions. Explaing your situation, including your new daughter, make create a contact who becomes your advocate before, during and after your procedure. Keep up your strength and positive attitude. It honestly does make a world of difference, not only to you but to your husband and daughter. It's not easy, and you don't need to fake a smile. Let them know that your are fighting this cancer and that you will beat it. My best, Craig (Dr. Songbird) Drsongbird Sun, 26 Mar 2006 00:00:00 GMT Craig, My trip to MD Anderson didn't happen and I ended up at Univ. of IL Med Center for a second opinion. Thanks to the insurance. I have heard the same thing from 2 doctors now who have said the same thing that MD Anderson did when my OB spoke with them. I have not seen an oncologist and it seems that I am going to have to wait until after my surgery which I scheduled for 4/11 at LGH in Park Ridge. I guess some staging needs to be done to see whether or not lymph nodes have been affected. This will determine whether or not I will need chemo. We do know that the bladder muscle wall has been affected. Both MDs are not recommending chemo. I feel that since I am otherwise healthy, I need to do everything possible to make sure it never comes back. Q: Does the oncologist need to determine whether or not chemo is appropriate or does the surgeon along with the oncologist? and What type of oncologist is best? The second-opinion MD said that outside of the area in the bladder where the tumor was resected (dome of bladder) that the rest looks "pristine". I am just praying it is no where else. This MD also feels that I should fight this with everything I have since I am so young. It is all so confusing and I am hoping that what we are doing is the right thing. I have every intention of fighting this thing for as long as it takes. My husband and I are still planning on having another child. That is the long-term goal. Otherwise, I will definitely be there to see my little one grow up. She is the one who is providing me with the strength to beat this cancer. I am trying to get a hold of you via phone and have called MD Anderson for your info. I hope I can find it. I would like to talk with you before surgery. Thanks for you last letter. Anna C. Annac Sat, 25 Mar 2006 00:00:00 GMT Dear Annac - I feel the urgency of your letter. I have children (4) and I think beating this for them is a lot of what helped me to focus on surviving this cancer. I am in Chicago as well, and would be glad to give you my number(s) if you would like to talk. It has been my experience that sharing the path lightens the load. I also talk with urachal cancer patients referred through MD Anderson Cancer Center. I am not a medical doctor: I will be glad to share the knowledge I've obtained, as well as my experiences and the experiences of others who have shared with me. Your body is your own, and it is important that you make educated decisions so that you are a direct participant in your treatment/recovery. Ask the docs every questions you can think of, confirm anything you are told, and use your heart and your mind to select the choices that are best for you and your family. Not knowing if we'll talk, let me share some thoughts on what you have written: First, if you had to have this cancer, it's a blessing that it was discoverd at such an early time. You will hear the term "encapsulated" used to describe your type of tumor - this was the same type of tumor that I had. To get a mental picture of the tumor, you might think of it as you would an inflated balloon - the balloon itself contains air that does not escape to the outside as long as the baloon remins intact - from what you've said, it appears this is the case for you. Since the tumor did not break through the bladder wall, it didn't have the option to spread into that organ. My tumor had gone through the bladder wall, but surgery took care of that issue. For those I have talked with, encapsulated tumors have primarily been handled with surgery. During the surgery, the surgeon will check for "clear margins" - a medical term that means that the tissue surrounding the tumor has not been effected by the cancer/does not demonstrate abnormal tissue. In my case, my surgical oncologist removed tissue surrounding the tumor and connecting tissue. As you probably already know, the urachus is the connective tissue between the belly button and the bladder - it is the pathway used to dispose of waste through the umbilical cord, last used when your mother was pregnant with you. In most people, the urachas seals itself after birth. For those special few of us, cancer develops in the urachal tissue that remains from that connection with your mother. As you have probably read in other posts, I never had/needed chemo. My surgical oncologist felt comfortable that he would be able to remove the tumor and that he could remove enough "margin" of clear tissue to be comfortable that the cancer had not spread. In fact, he drew me a picture of what the surgery would look like the first time I met him. He followed that drawing and the result was as he said it would be. For some, the cancer has not been encapsulated, and the cancerous cells have spread to other locations in the body. the most typical of these sites are the lymph nodes and lungs - hence why they are looking at that for you. Those individuals with whom I have worked have all received chemotherapy. Some oncologists als give chemo as an additional measure to cut down on the chances of recurrance - this really varies by doctor. Again, as mine was encapsulated, I had no chemo - and no reocurrance in 11+ years. It sounds to me as if you are otherwise healthy, and certainly able to give birth to a lovely young lady. Too, you are young - three years younger than I was when my cancer was discovered, and stats showed that I was very young as compared to most cases. I believe that all of these things point to a very positive outcome for you - and for your family. It would certainly be important to discuss your family plans with your surgeon/oncologist. That doctor needs to know and respect your wishes and choices. My surgery was performed in Chciago at the University of Illinois Hospitals. My second choice was MD Anderson. I'd be glad to refer you on should you wish. Let's talk - know that my prayers and those of my family will be with you all the way through this issue. Neither you nor your husband need to walk through this alone. Craig Drsongbird Wed, 15 Mar 2006 00:00:00 GMT I am a 37 year old female who was diagnosed on 3/6/06 with urachal adenocarcinoma. I have a 7 mo old daughter who was the reason that the tumor was discovered. I was bleeding thru most of my pregnancy and still after she was born. I ended up at the urologist who thought I had a polyp and did a transurethral resection of a bladder tumor only to find that it was urachal cancer. The tumor was the size of a half dollar and did not break through the bladder wall. My CT scan and chest xray are clear except for a 5mmm lesion on my liver that they do not seem too concerned about. I don't know what to think. I don't know what stage I'm in. I worry now that the doctor has cut into it that this stupid little cells are floating around and are going to show up someplace else. Is there any way to find out is it just serial CTs and MRIs for the rest of my life. I am in Chicago and am going to go to MD Anderson for a second opinion in the next 2 weeks. I am scared out of my mind. It took he 4 days to even think about fighting this because it is such an awful cancer. My husband and I have only been married 2-1/2 years and were planning on having another child. I don't know if this is possible, but I don't want to give up on our plans. I just keep hearing how many people continue to have the cancer show up elsewhere in their body. It is all so overwhelming. My daughter needs me and I don't want to leave her alone. Right now it is all so hard. I'm not worried about the surgery, but I want to have the right one done and receive the best, most effective treatment that this thing doesn't come back. I doesn't belong in me. Do you have any suggestions? What more can I do? Annac Sat, 11 Mar 2006 00:00:00 GMT Beverly - Glad to make the connection with you as a fellow survivor. I sense from your questions that a telephone conversation might be helpful. Email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- and we can set something up if you'd like. Some answers to your questions - They removed the top of my bladder (partial cystectomy - pardon the spelling) the tumor, surrounding muscle and tissue, the urachus, and tissue surrounding and including my naval. My tumor was what is called "encapsulated". That means there was no evidence of spread to lymph nodes or other abdominal organs or tissues. While the operation was in process, the docs sent tissue sample of the tunor and the attached tissue that they removed to pathology for the initial analysis. The initial result that was returned to them showed no trace of cancer (seeds, additional tumors, etc.)in the surrounding tissue that had been removed. The removal of tissue surrounding the tumor is often called the "margin" - tissue that was removed as a precaution for possible seeds or other cancerous matter not visable to the naked eye. Tissue samples were also sent out to a site in Iowa (I live in Chicago burbs) where, in a week or so, the same evaluation of the cancerous tumor and margin was confirmed. My doctor told me that there was no need for chemo as there was no evidence of spread outside the tumor into the margin. Everyone's body is different - every body reacts to surgeries, medicine, and diseases differently. Having worked in a medical school for 8+ years, I learned that the practice of medicine is truly one of "best guess based on experience". Having a doc or team of docs that have had experience in treating this type of cancer is very important in every way. Sometimes the result is a unique combination of medicine/chemo: as in our cases, it appears that surgery removed the cancerous mass - as my doc said the first night I met him, "...surgery is all you'll need...". My doc is a world renown soft tissue oncologist, and I trusted that he knew. I'm sure that if he had founf additional lesions, seeds, or other issues that he would have chosen to introduce chemo as part of the treatment plan. I had MRI's or CTScans (can't remember which) once a month for the first year, every three months for second, then once a year unitl I hit year seven years, at which time he said, "...have a nice life - only come back if you feel something is going on." I've sent roses to his office and staff every year, one for each year that I have been given the gift of life. My surgeries have been for many different issues. I had gangreen at the surgical site, a lung colapse post surgery (called atelectasis - sp?), two blood clots in lungs (post surgery complication), an ulcerated gall bladder, a neck/jaw tumor, and a fundal plication (again sp?), where the top of the stomach is rebuilt to stop acid reflux etc.that failed. Others as well, and thankfully none of these were cancerous. I guess my body just keeps getting taken to the shop and rebuilt on an as-needed basis. Another note: 40 and younger is a real rarity, even in this rare form of cancer. Research I found in the last few years indcated that the majority of those diagnosed were men in their 70's and 80's. Of the people with whom I've had contact in the last 11 years, there has been a pretty even split male/female. Age wise the youngest = 20, oldest 80's. Maybe because we're of the generation that asks more questions and demands more information and answers (than those in their 70's-80's)from our physicians, we are more comfortable talk with the docs and each other. In regard to getting additional medical info - latest treatment or gettin g a doc to say what he would do in this case - I'm not surprised at the phone call transfers. My experience has been that docs can't/won't diagnose over the phone: they don't know you, your body, or your particular case. And come to think of it, I don't think I'd want a doc who felt comfortable with "dial-up diagnosis". I've been long winded, but i hope I have answered at least some of your questions. I'll answer anything asked with the following qualification: I am not a medical doctor. I can talk from my experience, my experiences communicating with others with urachal cancer, and I can share what I've found. I trust that you understand. As you have questions, ask away. I found no one to talk to when I went though this: no one could tell me what was happening; or what it would feel like; or when I'd feel good again; or what physical pain I would feel; or the length of phsical recovery; or the mental recovery that is required; - or how to choose not to be a victim. I understand what it is to feel alone; know that you are not alone: all of us, the survivors, walk with you. My God bless you and make you aware of His presence as He did and does for me, even in the darkest, most alone times. Doc Drsongbird Wed, 01 Feb 2006 00:00:00 GMT Hi Doc! I'm new too! I'm a 36 year old female who was diagnosed with Urachal Cancer on 1/17/06. They removed part of my bladder as well as the urachus on 1/12. The pathology report came in later. It appears to be in the earlier stages but I'm very concerned about these "seeds" I've been reading about. Did you have any? Also, do you mind if I ask what your surgeries were for? What did they remove? Did your Surgical Oncologist feel chemo/radiation was too experimental back then? Do you know if he feels the same way today? I've tried calling MDA a couple of times but all they do is transfer me. No one seems to be able to help. I'm glad to see that you have beaten this and thank you for staying in touch to inspire others. Beverly :) Beverly_1 Wed, 01 Feb 2006 00:00:00 GMT I feel so blessed reading how you are dealing with your situation. Each of us have our own story, and yours' says "winner" all over it. I found that my children were a great help to me. I told them as much as they could understand, and in their own way they helped to make the path a bit easier to travel. You have the best in terms of docs and hospitals. The two you have been in contact with were (especially MDA) a possibility for me, but I choose the med school/hospital where I worked at the time based on the proximity and the surgeon I worked with - and it was easier with the kids. It's my prayer that you will continue to be a survivor, and that in time I'll know you as an 11 year survivor. Stay in touch. All my best, Doc (51 and glad of it!) Drsongbird Mon, 30 Jan 2006 00:00:00 GMT Dr Songbird - I am a new member on the board today (1-30-06). I've read a bit of this thread and appreciate what you have to say. I was diagnosed with urachal cancer in November, 2004, soon after I had turned 37. Initial treatment was surgery to remove a grapefruit-sized tumor. The doctors found small "seed" tumors spread throughout the abdominal cavity, ranging in size from popcorn kernels to an inch in diameter. They had to take a little of the bladder but luckily nothing was inside any other organs. (Perhaps that's why it took so long to find - the only real symptom I had was severe abdominal pain for about a month.) I've been on chemo since then, and luckily I am doing quite well. I have been told that I am a permanent chemo patient. My oncologist consulted with the local "Tumor Board," MD Anderson, and the Mayo Clinic, and the consensus was to treat mine like colon cancer. I had a Port-o-Cath implanted and get the drugs every two weeks. (Oxaliplatin at first - yuck - and 5-FU; now my dose has been cut way back and I get only the 5-FU.) I've had about five CT scans over the last year and all have been clear, but no MRIs. And the doctor tracks the level of a marker chemical - CEA ("carcenoembryonic antigen"). The levels have always been at the lowest level the test can measure. Having chemo every two weeks, except for periodic breaks (I'm told 3-4 times per year, for a vacation, for example), seems like a bummer...but it beats the alternative! I am down for a couple of days after each treatment, so I sit at home and catch up on the cooking shows. When I was getting the higher doses of chemo I had some nerve and skin problems but those are gone now. This cancer is not fun but there are a LOT WORSE things that could have happened to me! In the back of my mind I hope for a miracle pill, but in the meantime I try as much as possible to live my life as I did before. I have two kids to raise (3 and 12) and a house to pay off, after all! (And a truck we bought last summer...I have every intention of meeting my financial obligations!) I felt down when I was sitting in the hospital after my surgery, as to be expected, but I decided that there is a certain percentage of cancer patients who are survivors, and that I would be among that group. If there is anyone else who has had or is having a similar treatment I'd love to hear from you (or anyone else in our exclusive "urachal cancer" club)! Warren Quaestor Mon, 30 Jan 2006 00:00:00 GMT Dear Theresa, It's been awhile since I have checked the message board. My mother's cancer came back in three different spots, and she has been doing chemo for the past four weeks. It has been a very stressful time for all of us. I checked the site the other day, and noticed that you posted a message. Thank you so much. In your message you talked about getting information from MD Anderson. I would really like to get that information, but I am not sure what phone number or what department I should ask for. Would you be able to direct me in the right direction? I appreciate any help that you can give me. Be Blessed Julie Lanki Wed, 21 Dec 2005 00:00:00 GMT Hello, Please forgive me for invading your life but I am a desperate woman. My best friend Staci has urachal cancer and her doctors just recently told her there is nothing more they can do. I don't think they have done nearly enough. 1/04 she was admitted to the hospital for exploratory surgery by her urologist for a sample of a cyst. The next thing we knew, she was diagnosed with this cancer but they said they "got it all". She never had chemo. For the next year she had some blood work and a few scans. But only after her complaining consistantly to them about pain did they do another exploratory surgery. 1/05 they found more cancer. Musin everywhere. They did a few bouts of treatment over the last 9 months and this week she is being sent home with hospice!! She feels strong, healthy. She wants more help and no one will give it to her. ANY SUGGESTIONS? What do you know.. Who do you know... Please help. Brenda Brenda_a_1 Thu, 13 Oct 2005 00:00:00 GMT Dear Cindy and Julie, My heart goes out to both of you having a parent dealing with cancer. This is a very emotional and psychological time for your parents facing their health issues. In 1998, at age 48, I was diagnosed with urachal cancer; I underwent surgery without chemo or radiation. It had gone through bladder wall; I lost part of the bladder along with my navel. The tumor was encased in a membrane and he got a clear boarder. Research on the Internet, and there was very little in 1998, did not give me hope for the survival rate of a urachal cancer, but I figured they did not know enough, due to the rareness, to give that type of information. Cancer is frightening and your parents need to know that you are there for them. Julie, I hope your mother has someone with her on a daily basis? Cindy, you did not say why your father might have given up. If he suffered the loss of your mother or has had other medical problems he may have decided to give up or he does not want his family to see him when he is down physically. Cindy, call MD Anderson and ask for a copy of chapter 17 from "Textbook of Uncommon Cancer" which has a lot of information about urachal cancer. This is a time that both of you need to be taking care of yourself before you can take care of your parents. Check to see if there is a support group in your area. Through a support group (on two previous cancers in the 80's) I learned about using visualization, journalizing, and meditation to cope- these coping items would also be good for a caregiver. Wishing you the light of Gods love, Theresa Theresa1 Tue, 06 Sep 2005 00:00:00 GMT I have been combing the internet and thankfully have stumbled upon this site. I don't know what help, if any you can be, but I am feeling extremely sad as I report that my father was diagnosed with stage 4 urachal cancer in May and on August 3rd had surgery that resulted in removal of his bladder and colon leaving him with an ostomy and urostomy. Unfortunately they were not able to remove all the cancer as it is connected to blood vessels so we are left with the hope of chemo/radiation. Here's the thing, my father has completely given up and is getting weaker each day. He has totally detached himself from the family and can no longer walk. We don't know if this is the cancer growing or a pulled muscle, he has an MRI on Sept. 7th. My question is this, what are the survival rates, or is this one of these cancers that has it's own schedule? Please email me at your earliest convenience to: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- with any info you can give me on this rare form of cancer. Thanks in advance. Cindy Saykay516 Thu, 01 Sep 2005 00:00:00 GMT Julie and Mom - In my experience, MRI's show what's there very clearly. I'd choose to celebrate those pictures and the doc's decision of no chemo at this time. The 2 month CTS/MRI will catch changes - especially now that they have a set of "before w/cancer" and "post surgery clear" pictures. They'll compare those everytime they see you, and will be able to check for any present change - or no change! My (and most I've had contact with)doctors were very agressive with cancer; the fact that they see no reason to start chemo doesn't mean they aren't watching - let them do the worrying if there's any to be done. Do celebrate, Mom, while you are healing. I remember the healing process was pretty painful early on, but please know that it gets better. As much as you can/if it is a joy for you, spend time outdoors enjoying the beauty that's present in the world - in every season. I found a new appreciation for many things post cancer as I'm sure you will. Having the big "C" did effect every part of my life as it has/will yours. For a considerable period of time, every pain and twitch I felt made me think of the cancer and honestly, wondering if it was back. I was always reasurred when the CTS/MRI outcomes were clear - the tangible result that they provided helped to ease my mind. I could see that I was clear. I also knew that when there was a problem, the docs would see it and focus their efforts on returning me to wholeness. As it did for me, I am hopeful that you'll be able to look at the world more clearly without having the word "CANCER" filter all that happens. Celebrate the 1 week clear - the one month clear - maybe now just one day clear. It's intelligent to be scared: it was a nasty, painful event. I'd wonder if you weren't. One foot in front of the other has worked for me, so I can recommend that process. I had setbacks, both physical and emotional; they are a part of life regardless of the disease. I sat down and rested when I needed to - your body will tell you what it needs. It has been amazing to me how far I have had the opportunity to go, looking back over the many single steps. Bless you both - Craig Drsongbird Thu, 25 Aug 2005 00:00:00 GMT Hi Craig, I just want to start off saying thank you so much for taking the time to respond to my email. I truly appreciate it. I sent the message to my mom as well and she was very touched by it. As I said in the previous message, that my mom went to get the results of her MRI (thought it was a ct scan) and to talk about her treatment. The thing is that when the doctor talked to her about the MRI, they said that there was nothing there. I know that MRI's are pretty precise, but she was taken back by the results. She knows that the surgeon saw it and took a biopsy of it, but now, they can't find anything on the MRI. Could that be possible? She spoke to her surgeon today to have him double check, and he couldn't find anything either. He did say that it could have shrunk and be too small for the MRI to pick it up. It's just very strange to us, because the lymph node that they couldn't get out was encased in scar tissue which included major blood vessels as well (which ended up being the size of a golf ball) and now they can't even see that. Anyway, my mother doesn't really know what to think... How much should she trust this MRI? The end result is that the doctor's don't want to put her on any chemo treatments, because they see that there is nothing to treat. They do want to see her in 2 months to do another MRI and get a chest x-ray. We truly don't know if we should cry with happiness, or be worried that they couldn't find it when the surgeon saw it during his procedure. Anyway, I will keep you posted on the news. It really is nice to have someone to chat with about something that we all really know so little about, but who are experiencing it. Thanks again, and my mother thanks you as well. Be Blessed Julie Lanki Wed, 24 Aug 2005 00:00:00 GMT Julie - So sorry to hear of your mom's diagnosis-any type of cancer is a frightening thing. I'm not a doctor - I have walked at least a part of the same road your mother is travelling, and will offer my knowledge as best I can. There are very few of us as you now know - it seems to bring comfort when we work together. My tumor was also of that size, though it had not speard to the lymph nodes. My treatment was surgery, and did not require chemo. Since that time, I have worked with a number of people who have the same diagnosis, and as you found out (due to it's rarity) there does not seem to be a consensus to treatment. The lymphnode spread is the main issue - to keep it from spreading further. A number of survivors have also had radiation, specifically those where a direct target was indicated - I don't know if that would include the lymph area you've written about. That might be a good question for your mother to ask. The chemo drug that has been used has often varied, but has been a one week on, one week off IV drip for many survivors. In my experience, the CAT/MRI path is very important. For the first year, I had a set every month so the docs could check for growth/recurrance. It helped me to be able to look at the site of the cancer. I guess it helped me to focus my energy on healing - it may sound dorky, but that focus on healing does seem to help many, and it sure did for me. In regard to Doc's, I can share the individual I worked with here in the Chicago area. I also know that Sloan-Kettering on the East Coast and MD Anderson in Houston have dealt with urachal cancer. Another individual worked with a doc in Philadelphia. My doc was a surgical oncologist -he, therefore, put his faith in a surgical treatment. Other individuals have had two main treatment docs - an oncologist and a urologist. I would be glad to talk with your mom and walk through this with her if she would find it comforting and/or helpful. I know that I was very alone, and I believe I would have been more hopeful had I been able to find another survivor to talk to. If you/your mom would like to make contact, you can call MD Anderson's main phone number and ask for the program that links survivors with those who are currently fighting. If you ask for help with urachal cancer (and you could ask for my name, Craig)I'm pretty sure we'd have the opportunity to talk. Please know that my prayers are with you both - for continued recovery for your Mom and for strength and focus for you. CRaig Drsongbird Mon, 22 Aug 2005 00:00:00 GMT Hello Craig, My name is Julie, and my mom has urachal cancer. She just had surgery a little over a month ago, and removed a tumor the size of a grapefruit. There is cancer in her lymph node near her pelvic area that they could not remove, due to major blood vessels being in the way. She has an appointment next week regarding results from a CT-scan, and to talk about treatment. This doctor at Columbia Presbyterian in NY saw only 2 cases last year. They would like to put her on Capecitabine daily (Chemo pill) and irinotecan every 3 weeks. They also told her that they needed to do more research as it is such a rare cancer. She is very nervous about her meeting next week, and is not sure what types of questions she should ask. Maybe since you have been through it or know others, you may have some suggestions. My mother is also very depressed and is sad all the time. I try to tell her that strength is key, but it doesn't seem to be working. It is very difficult for me due to the fact that I live in Georgia and she in NY. I know that you have talked about MD Anderson, and I was wondering if there was a specific Doctor that may know more about it. I hope to hear from you soon, and I appreciate your time. Julie Lanki Sun, 21 Aug 2005 00:00:00 GMT Jim - Glad you are doing better. Much as I don't like hospitals, its a really good thing when they get it right.... Is the cancer still in check? I'm praying that's so as it seemed that the anemia was the main issue. Sorry for not replying sooner. Work has been a bear..... Craig Drsongbird Tue, 14 Jun 2005 00:00:00 GMT Hi Craig, thanks for the note. Just home from 5 days in hospital for anemia, feeling better now, had two transfusions which helped. I noticed a reply from a Linda L, she and I have been in touch for about a year now, great lady, very upbeat, and a big help. Thanks again, JIM JamesM_H Fri, 10 Jun 2005 00:00:00 GMT JIm - Glad to know you are doing well. I understand that the chemo process can really wear you down, glad that it all seems to be held at bay. I look forward to hearing from you and will pray for renewed and sustained energy, strength, and healing. Craig Drsongbird Wed, 25 May 2005 00:00:00 GMT Thanks for your reply 3 weeks ago. I have not been on the computer as just totally fatigued from the radiation (which got rid of the rib lesion in 10 treatments!) and the Alimta. Had some esophogitis side effect which landed me back in the hospital overnite with a spasm, but small price to pay! I have had numerous chemos and I guess the cancer is being held at bay for now. Mayo is certain the Alimta is the answer as their are nodules in the lungs. So I will continue to trust their judgement. I had called MD Anderson a few months ago and reviewed my case and they said everything they could think of was being done. Love to talk with you sometime though. You sound like an inspiring guy. GOD BLESS, take care, Jim H JamesM_H Tue, 24 May 2005 00:00:00 GMT Linda - So glad you are doing well, and are cancer free. I was checked once a month for the first year (CTScan or MRI), every three months for the next 3 years, and then once a month until the 7th aniversery, when my doc said "See ya - have a great life!" (Not exactly those words, but that's what I heard. Yes, it was adenocarcinoma, muscin(sp?) producing, stage four. The stage does seem confusing, as it had not metasticized, but had gone through bladder wall and surrounding muscle. They sent the samples to to labs - one confirmed the diagnosis but would not stage due to rarity, second said stage 4. I'm content now with my stage 0! I have had multiple surgeries since the first time, some as a result of the initial surgery, others not, although the original medical assumption was that the cancer had returned. There are times I love it when they're wrong. Bless you, and keep in touch. I'll be glad to share time with you. Doc (Craig) Drsongbird Tue, 03 May 2005 00:00:00 GMT DR. songbird, Hello, I am a 55 year old female who was diagnosed with urachal adenocarcinoma, June 03. It had a spread to my ovary, and sigmoid colon. After surgery and 4 weeks rest,I started chemo treatments of Gemzar and Cisplatin,that were very agressive.Six months of treatment and testing and scans, my Dr. found me cancer free. It has been over one year and I have remained in remission. I am scanned etc. every5-6 months. I would like to find out if your cancer was adenocarcinoma,you did not mention that it was. Also if yours was diagnosed at stage 4, but no metastisis? Thank you for the info, wonderful to hear!! Linda L. Linda_l_4 Tue, 03 May 2005 00:00:00 GMT James - Good to hear that you are doing ok. I was 40 when I was diagnosed, and apparently it is rarely present in folks of that age. Most of the people I have talked to through the years have been in their 60's, with the exception of one female (late 20's) and one other male, around age 50. I still don't know how I escaped chemo - I am not aware of any other survivor who has not had to deal with chemo. The first night I saw my surgeon, he told me what the surgery would be like, how much tissue would need to be taken, and that chemo/raditation would only be used if the cancer recurred, which was typical at between one and three years. He said that things might change once he got inside, but thankfully all was as he predicted. I Guess the severe pain and bleeding I experienced served as an (uncomfortable) early warning, pre lymph node spread. Often this cancer does not cause pain or other symptoms so it is not caught as early for many. My tumor was the size of a softball, and was what they called encapsulated - in fact it had gone through the top of the bladder and surrounding muscle, but no farther. As a result of this surgery and a couple of others after, I've got no belly button (my kids thought that was funny)and a big cross on my midsection from sternum all the way down, as well as from side to side. I guess I could have considered it a "tummy tuck" as I was more than a bit smaller in the middle after the orginal surgery was done. So much for the graphics. I wish I could put you in touch with others who are going through the same chemo regimen as you - as this is the rarest of cancers, there is no set regimen of treatment that I've ever seen/heard. Over the years, my observation is that those who had older doctors seemed to have more (longer duration and strength) chemo than those with younger docs. This may be far from reality, but seems accurate for those with whom I have come in contact. If you would like, you might want to call MD Anderson to see if they have anyone who has a similar chemo experience. The folks I have worked with may not have chosen to talk to others after completing treatment. I'm glad to talk with you, and wish you many blessings as you walk this path. May you continue to experience the gift God gives to us in each and every day. Let me know how you are doing. Your friend, Craig Drsongbird Tue, 03 May 2005 00:00:00 GMT Thank you for posting your situation on the message board. I was diagnosed in 8/02 during an appendectomy. Took half the bladder and the urachal ligament. There was some cancer in the pelvic lymph nodes, and that was clear for a while, but came back. Had lots of different chemos at MAYO CLINIC in Jacksonville, and it kept nodes from spreading for a while. In Feb this year had severe anemia, and they found numerous lung nodules (sub centimeter so far) and a lytic lesion size of a golf ball on the 8th rib. Doing Alimta and Radiation oncology now. Love to chat more about this. I wonder how you got thru without chemo, that sure was a plus. I have to say I tolerated most of the chemo regimes quite well, even worked during some of it. I am 68 years old. Be great to hear back from you. Thanks again, God Bless, be well. JMH JamesM_H Tue, 03 May 2005 00:00:00 GMT I want you all to know there is hope. In December of 2005, I will be 11 years cancer free. My diagnosis was stage 4 urachal cancer, and I had surgery in Chicago at the University of Illinois. The process was long and difficult - as you all may already know. Doctors at first thought I had a vernereal disease, even tho I kept telling them there was no chance. At the time I was a single dad with 4 children, ages 14 down to 4. The surgery took along time to recover from. I know how fortunate I am that they took a great deal of muscle (including navel, top of bladdere and intersceding muscle), as I have had no recurrance and did not need chemo. I have had additional surgeries, somewhat related to the first, but none have exposed more cancer. Please feel free to talk with me. You can call the Anderson Cancer Center in Houston. I am on the calling board as a urachal survivor. I'll share the road with you if it will help. Bless you all. Doc Drsongbird Fri, 29 Apr 2005 00:00:00 GMT