Urachal Cancer Survivor

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

 

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.... Mark

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.... Mark

Your 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!

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.

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. Thanks

I 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 

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.

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)! Warren

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 yet

Hi,

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

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? Phil

Hi 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.