Urachal Andocarcinoma

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Urachal Andocarcinoma

by Malloys on Sun Oct 23, 2005 12:00 AM

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I am a 51 old male. I had urachal adoncarcinoma in Feb, 2001. It was small and encapusulated at the apex of my bladder. After consultations with other Drs. and clinics, they treated me with surgery. One third of my bladder, my urachus, belly button and surrounding lypmph nodes were removed. Via CT scans, I appeared cancer free until May, 2005. The cancer had spread to my lymph nodes, pelvis and a significant tumor next to my right kidney. They started treating me with a protocol used in clinical trials at MD Anderson. I have one week (Monday-Friday) followed by 2 weeks off. I am treated with Cisplation each of the treatment days and Gemzar on Monday and Fridays. I also wear a continuous pump with 5FU (7 X 24). After 3 treatments, I was re-scanned in August. The tumor and the lymph nodes showed improvment. I went through another series of 3 treatments and was scanned again on Oct 21, 2005. The results are VERY good. Almost all lymph node cancer is gone and the tumor has continued to shrink. No cancer appeared in the pelvis area. My Dr. is giving me an extra two weeks off in preparation for more treatments. The side effects have been very tough. But it is working. This is a tough cancer to treat and most results are not very positive. This combination has worked very good for me. The Drs. are even surprised at the results. There is hope. Malloy

Urachal Mucinous Adenocarcinoma

by Beverly_1 on Mon Jan 30, 2006 12:00 AM

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Hi Malloy, I was recently diagnosed with Urachal cancer and was wondering how you are doing. I have a lot of concerns because of the rarity of this cancer. I am a 36 year old female had surgery to remove the tumor on 1/12/06. They took out only the Urachus and part of my bladder. I still have my belly button and my lymph nodes. My Urologist had a Surgical Oncologist with him "just in case" and HE told my family he hadn't really even been needed and all looked really good. Then, on 1/17, we got the pathology report. A medical oncologist that I have since been referred to has told me he believes we should wait. He wants to do a CT Scan and blood work every three months but he also said that if it comes back, it won't be cureable. I'm concerned because my belly button WAS NOT removed and I'm curious...did they remove your lymph nodes as a precaution or because something was there? Do you feel the right course of action was taken in 2001? Do you think chemo or radiation, as a precautionary measure in 2001, may have helped with your situation somehow? How did you go about finding doctors and clinics with actual experience in this? Everyone I seem to talk to has to "look it up". I even tried to call MD Anderson but was transferred 7 times and ended up getting a nurse that said she'd see if she could find someone who can help and have them call me. I'm still waiting on that call.Do you have a contact that may be of use? I'm very concerned because no one seems to have "hands on" experience with this. I'm sorry for all of the questions but I feel like I'm hitting brick walls wherever I turn! I see that your message was posted in October so I'd love to hear how well you're doing. It's hard to keep positive when there are so many unknowns! Thanks for your time! I wish you well! Beverly

Urachal Adenocarcinoma Too

by Havehope on Wed Jun 07, 2006 12:00 AM

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Hi Beverly, Sorry to hear that you too have the diagnosis. Your message caught my eye, as I'm also 36 years old. I was diagnosed in 2003 during the birth of my son. Long story, but my urologist too didn't know what to do. He had trained at MD Anderson so he consulted with them. As a result, I had a partial cystectomy, urachal ligament, lymphnode, and bellybutton removable. Now the bellybutton removal was an option given to me - I couldn't tell you exactly what was communicated to my physician from MD Anderson but I got the impression that the lymphnode and belly button removal was a precautionary measure. They felt that I didn't need chemo because the surgery was the treatment for my situation. I don't know I agree with you DR. about no cure if the cancer returns. Lots of urachal patients are on chemo. I'm currently seeing a physician at Memorial Sloan Kettering in NYC and it seems like they all have experience with this cancer. I don't know where you are located, but you should really try to see someone at MD Anderson or Memorial Sloan. I'm sure there are other places in the country but these two institutions are I think the best in the world. If you go to MSKCC.org you will be able to get into the sloan kettering's website. I'm due to have a PET scan next week and if I get a chance to talk with my physician, I will ask the questions you have. Hang in there. Lucy

Thanks For The Reply on Urachal Cancer

by Beverly_1 on Mon Jun 12, 2006 12:00 AM

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Hi Lucy, Wow. What perfect timing. I know it sounds weird but I haven't really thought about my cancer much since February even though I get a CAT scan, cystoscopy and bloodwork done every three months ... until last week. So far, they have found nothing but, for some reason, I've been dwelling on it A LOT the past few days so I was really suprised to see a message and VERY glad. For reasons I can't explain, it was comforting to read your message. Thanks for responding. Have you been "clean" ever since the surgery? Are you just at the "watch and wait" stage? How do you feel about all that has been done ... the surgery, follow ups, etc? Sometimes, I have a hard time acknowledging the possible ramifications of what I have/had. I'm not in denial but I keep going on with life and then I'm suprised when the "what ifs" sneak up on me. Anyway, thanks for writing. Good luck with your visit. I hope all is well. Beverly :)

Waiting

by Rda71 on Wed Jun 28, 2006 12:00 AM

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Hi Beverly, Are your doctors just monitoring you at this point? My husband was diagnosed with urachal adenocarcinoma at the end of May and had surgery 4 days later. They removed the belly button, along with the tumor, and the dome of his bladder. They took 20 lymph nodes to biopsy them. All lymph nodes were clear, margins were good, and the cells were well differentiated. Subsequent tests- further CTs and a bone scan have all come back negative. Two oncologists and the urologists have all recommended monitoring as the course of action. We are both incredibly grateful for the positive news that it has not spread. My husband is finding it difficult to only "wait" and monitor, without doing something more proactive. I would love to hear how you are doing. Best wishes, Rachel

Urachal Adenocarcinoma Also

by Monsoon71 on Sun Aug 20, 2006 12:00 AM

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Hi Beverly, I was recently diagnosed with and treated for Urachal Adenocarcinoma. Like you, I had surgery and will be receiving scans and other tests (cystoscopy, blood work) every three months. In reading your post, I see that your doc did not remove your belly button. In a recent visit to my 3rd oncologist, he asked if I still had mine. When I told him no, he replied "good... If you still had it, I would be setting you up for a second surgery." The Oncologist who told me this is one of the best and has dealt with this type of cancer on several occasions. His name is Dr. William Oh and he is at Dana Farber in Boston. I would encourage you to look into another opinion as Dr. Oh wanted to make sure my belly button was removed since it is part of the urachal structure and can pose concerns for recurrence. I hope this finds you well and still cancer free. I see that you are on Dr. Songbird's string (urachal cancer survivor) so I know you have read some of the different treatment options/plans for us. My thoughts and prayers to you and your family. Derrick

on Waiting

by Beverly_1 on Mon Aug 21, 2006 12:00 AM

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Hi Rachel, How is your husband doing? I'm sorry I didn't respond sooner but I didn't get a notification stating that anyone had replied/responded to me. (I don't check this site regularly). The waiting is probably the toughest part for me (as well as the worry of "did I do enough"). So far so good, though. I thought it would go easier as time went on but it actually is a tiny bit more stressful each time. I feel like...the further away from my surgery I get, the more I'm pushing my luck! How is your husband dealing with it? Hope all is well. Thanks for contacting me! Keep in touch! Beverly :)

Belly Buttons & Urachal Cancer

by Beverly_1 on Mon Aug 21, 2006 12:00 AM

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Hi Derrick, Thanks for the note! Next time you talk to your Oncologist, can you ask him if he knows of someone in the Phoenix, AZ area that he would recommend? I love my Urologist but I'm not thrilled with the cancer doctor. My Urologist didn't think it was necessary to remove my belly button and I'd like to ask an Oncologist about it but I don't have a lot of faith in the one I'm seeing right now. I'm seriously considering picking another one but a recommendation sounds better than a blind choice off of a list. Do you think Dr. Oh would let me e-mail him with questions regarding this? I have read about the options but nothing really seems very conclusive. Surgery appears to be the top choice with a generous helping of "watch and wait" on the side. Also, the surgeries all vary a bit, here and there, depending on the surgeon. How long have you been dealing with your diagnosis? What made you drop your other two Oncologists? Sorry for all of the questions! Thanks, again, for contacting me! Beverly

Waiting/urachal Adenocarcinoma

by Rda71 on Mon Aug 21, 2006 12:00 AM

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Hi Beverly, Good to hear that you are doing well. My husband actually found your message and emailed you just the other day (Derrick) and he is doing very well. The waiting is of course very difficult. I keep expecting it to get easier over time, but it seems to be a bell curve with repeated ups and downs. We are nearing another round of tests and the nerves, for me at least, are there! I can definitely relate on feeling like you are pushing your luck. I am hoping that after the 2 or 3 year mark that will ease up a bit. I am sure Derrick will be in contact regarding Dr. Oh. I imagine he might know someone out your way. (We used to live in Flagstaff!) I would recommend getting more opinions from other oncologists until you find one or more that you are comfortable with! Best of luck and continued good health, Rachel

Urachal Cancer & Belly Buttons - Response

by Monsoon71 on Mon Aug 21, 2006 12:00 AM

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Hi Beverly, I will certainly talk with my Oncologist to see if he knows anyone in AZ. If so, I'll get back to you ASAP. However, feel free to contact him directly (I don't think he'll mind)- Dr. William Oh - you can find his contact info on the Dana Farber web site. I am very happy with him and he used to study colorectal cancers. Given the similarities between those and Urachal tumors, I feel very confident in his ideas and plans. I'm also seeing an oncologist at NY Presb/columbia university for additional input. The more opinions the better in my book. I still see my local oncolgist to plan and schedule my scans etc. but all reports and films get CC'd to my other docs. I don't trust my local oncolgist since she has never seen this before. I've been dealing with this diagnosis since May of this year (not too long) and as with you, I continue to see varied info but, one thing I've seen is that surgery and chemo all depend on the staging. I went through surgery and was not given chemo because of the good factors involved. Most doctors will avoid chemo if you don't need it. They don't want to damage you with chemicals when you have a good chance not to need them. To answer a question you had in a previous post, Lymph nodes are taken to see if the cancer has begun to spread. If no lymph nodes are positive, your chances are better than if cancer exists in them. This also helps the docs to determine your exact stage and how a treatment plan should be followed. Lastly, don't worry about all the questions. We are in this together and answers are what we all need. Sorry that you are not happy with your docs. As others have suggested, I also agree that going to a major cancer center is a good idea. At least for peace of mind. You may hear the same plan but at least you know that it's consistent. I hope you are still remaining positive and more importantly, I hope you remain cancer free. Remember to ask all the questions you need especially from the doctors. Uncertainty is the worst I think for us. My thoughts and prayers to you and your family. Derrick
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