Urachal Cancer Survivor

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Urachal Cancer

by Memphisbelle on Fri Jun 09, 2006 12:00 AM

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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

Candidate For Surgery

by Drsongbird on Sat Jun 10, 2006 12:00 AM

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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

Urachal Adenocarcinoma - Trial

by Monsoon71 on Wed Jun 14, 2006 12:00 AM

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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

Dr. Petrylak

by Ccdgal on Tue Jun 27, 2006 12:00 AM

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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

Dr. Petrylak - Urachal Adenocarcinoma Plan

by Monsoon71 on Thu Jun 29, 2006 12:00 AM

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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

Jane Responds to Urachal Treatment

by Urachualknower on Thu Jul 27, 2006 12:00 AM

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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

we Just Don't Know Yet

by Gmnot56 on Tue Aug 01, 2006 12:00 AM

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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

we Just Don't Know

by Drsongbird on Wed Aug 02, 2006 12:00 AM

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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

Response to New Urachal Treatment

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

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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

Urinoma or Lymphocele

by Monsoon71 on Wed Sep 13, 2006 12:00 AM

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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
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