Urachal Cancer

Hey there,

I am a 33 year old male that was diagnosed with urachal adenocarcinoma on Jan. 31st, which led me to surgery on Feb.17th that removed a tumor and my bladder, along with 14 limphnodes. Six of them had cancer and the rest were cancer free. Now I have a neo-bladder which is made from a section of my bowel. I am currently taking chemo at U of M hospital in Michigan. I was very excited to find a message board that has some other people with the same condition and to find that they are surviving past the 1 to 2 years that was diagnosed to me. This is a light at the end of a long tunnel for me, because I wasn't sure how rare this was. Just reading through here helps me a bunch knowing that I have somewher to go with questions and concerns.

Just wanted to let someone know that I will be checking back into this site very often and probably asking hundreds of questions. Glad to see all of you.

Jim B.

Hi Jim,
Sorry you had to join the club. I wanted to let you know about another list that is a lot more active than this one as to bladder cancer. Go to: www.acor.org and click on the "Mailing List" then select bladder cancer there you will find 500-600 active members that you can ask questions to and get very informed answers. I had my neobladder on 11/01/05 I was 48 at the time I was lucky that I had no lymph involvement. A other good resource is www.bcan.org

Good luck

Tim

I'm a 38 year old male who was diagnosed in late 2004. I had a grapefruit-sized tumor removed and a small part of my bladder. I'm on the "chemo until further notice" plan because the tumor had spread to dozens (or more) of small "seed"-style tumors. I was on oxaliplatin and 5-FU for about six months, and now just 5-FU at a reduced dose. It seems to have worked so far! My CEA level has been <1 every time it's been checked since I started chemo and no trace of malignancy has shown up on CT scans. Keep your hopes up! Other than having chemo every two weeks, which makes me tired for a day or so, and an occasional CT scan, I live my life as before and plan to do so for a long time.

Good luck to you. My sister is a 4 year urachual survivor with 2 surgeries under her belt and one chemo protocl (5FUL, irinotecan and avastin). Her cancer recently returned in a lymph node and her doctor is putting her in a trial run out of Columbia Presbyterian in NYC. If your chemo is unsuccessful ( and for you and everyone on this site I hope beyond hope it is successful!!!), know there are alot of things to try out there. Please have your dr. connect with Dr. P and ask about this trial. It begins on 6/21 and is a daily pill for 28 days, then a scan, then another 28 days. Dr. P is highly regarded in the industry and please have your dr. touch base with him. My sister spoke with Dr. P today and he is receptive to the calls. Just mention my name (Melissa and my sister Jane). He'll know who we are.

Melissa

I am writing to Melissa, whose sister has Urachal Cancer, as does my friend.

She is in her thirties and the cancer is in her abdomen and around her liver.

You mentioned Dr. P. at Columbia Presbyterian in NYC.

Do you think it would be worthwhile for my friend to see him?

Previous chemo treatments and one operation have not helped. She is now in a great deal of pain, on Vicadin.

Is there ANYTHING you can help me with? Any information you can provide me with? We are desparate. She has two little girls and a wonderful husband.

Thank you so much>

I will wait to hear from you.

Elaine
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Sorry it took me so long to respond back. Dr. Dan Petrylak at Columbia Pres. in NYC is the man to see or at least call. 28 days ago he started my sister on a VERY new experimental drug (not yet on the market or named for that matter). After 28 days and NO SIDE EFFECTS, this incurable, tough cancer seems to be responding. She will stay on it for another 28 days and get another PET scan to see if the tumor is shrinking. We were all surprised not to see any growth after 8 weeks (last time she had a reoccurrence, the tumor doubles in size every 6 weeks).

HE also told her that if this didn't work, he had another trick up his sleeve with a new adeno protocal that was pushing adenos back as much as 33%. This type of treatment may help your friend get some pain relief.

I know that we can't exchange personal info on this site but please keep me updated. I accompany my sister to all her visits to Dr. P and can always relay my personal info to you thru his office.

My prayers go out to your friend. This is sooo very tough but remind her that alot of folks are trying different things with success. Maybe next time you write, you could let me know the chemo treatments she had. I might have something to add based upon my research.

Melissa

I was diagnosed with Urachal cancer in6/06. I am currently recieving post-op tretment from Dr. Dean Bajorin at Memorial sloan Kettering in Manhattan. According to my surgeon, Dr. Doug Scherr at Weil Cornell, Dr. Petrylak trained under Dr. Bajorin and it was recommended that I see Dr. Bajorin as the person to see for this cancer in this part of the country. So there is another source for all of you., Best of luck and recovery to all, Lynn