Urachal Cancer Survivor

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RE: Urachal Adenocarcinoma

by One_step_at_a_time on Sun Aug 26, 2007 12:00 AM

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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.

RE: Jane's Cancer Continues to Shrink

by One_step_at_a_time on Sun Aug 26, 2007 12:00 AM

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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.

Urachal cancer of my mom

by peanuts1972 on Mon Oct 22, 2007 12:00 AM

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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,




RE: Another Urachal Cancer Patient

by Daisy_Bear on Tue Oct 23, 2007 12:00 AM

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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)! Warren

Hi Quaestor

I 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

RE: Another Urachal Cancer Patient

by One_step_at_a_time on Fri Nov 30, 2007 12:00 AM

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Hi.  How are all of you in treatment doing?

Any news or breakthroughs?

RE: Urachal Adenocarcinoma

by woolfer on Thu Dec 06, 2007 12:00 AM

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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? 


RE: Urachal Adenocarcinoma

by teacherjane on Fri Mar 21, 2008 12:00 AM

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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?

RE: Urachal Adenocarcinoma

by Graham_D on Thu Apr 24, 2008 12:00 AM

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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:


Comments welcomed.

My cancer story

by tourlou on Fri Oct 03, 2008 12:00 AM

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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,

RE: My cancer story

by Graham_D on Sun Oct 05, 2008 12:00 AM

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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.


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