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Neobladder
Hi, I have interstitial cystitis, a very painful, uncurable disease of the bladder and am considering neobladder surgery. This website caught my attention because of all the doctor recommendations. Does anyone out there have IC and had their bladder removed due to it?
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8 Replies
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Hi Sara-
I had my surgery for cystectomy & neo bladder 5 weeks ago & get the foley out tomorrow. May I ask…why is it harder for women? I too want to hear more stories from women living with neo bladders. It seemed that they were all men under that topic on this forum. I am mostly anxious to know how long I may be looking at being incontinent and when in the world I’ll get my appetite back! I was only 105 before surgery and now 94. I cannot afford to keep losing and am drinking lots of the supplement drinks.
Would love to hear from women living with neo.
DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG – 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to Indiana Pouch April 2019. Since have Stoma Stenosis & bladder spasms.
Hello. I had my bladder removed last July 2017. I was given the option only for a ileostomy conduit (stoma)/urostomy bag. I am consulting with a urologist tomorrow to discuss converting to a neobladder. Any women in here that have had a neobladder? Pros/cons? Thank you!
Actually have to go to UCSF because of insurance. Dr. Max Meng may have done as many if not more neobladders on women. Yeah – it’s nice to have a woman doctor though.
In my personal opinion there is no contest here. Stanford by far. The chairman of the urology department is a woman who specializes in bladder cancer and is world-reknown
https://urology.stanford.edu/faculty.html
Since women have more problems with neobladders you want only the best surgeon possible. Fortunately you are
located in the right place!!Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Newly diagnosed with stage 2 high grade bladder cancer. I’m an active 65 yr woman. Thinking of neobladder and would like to hear more experiences from women with neobladder. Recommendations for surgeons in San Francisco Bay Area? UCSF? Stanford? Both about the same?
Please read my reply to ICStinks (right below your post) if you haven’t. You mention that you are being seen by two “specialists”but didn’t mention who they are or where they are. I am surprised that two “specialists” would recommend a neobladder for you.
That being said, we are not really familiar with IC here, as our focus is bladder cancer. You might find better answers to your questions at a site that specializes in IC such as
https://www.ichelp.org/Wishing you the best
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hello!
Looking for a bit of advice.
I am 21 years old and I’ve recently been having a lot of bladder problems. Very similar to interstitial cystitis although waiting on biopsy results to rule out anything more sinister. I am currently managing some of my symptoms by using an indwelling urethral catheter however the two specialists treating me are keen to try neobladder surgery.
If anyone has had the surgery or knows a lot about it, I would be interested in knowing the benefits and negatives of the surgery. As I am very young to be having major surgery like this I would also like some information about how it would affect me for the rest of my life.
I do understand that IC is a very uncomfortable and not easily treatable condition. However, I still wonder if radical cystectomy is the right solution. Also, I suspect that you are female (as IC is much more common in women) and neobladders are not necessarily a good option for women; they are much more likely to be either incontinent or hypercontinent with this surgery. If you do decide on cystectomy, an Indiana pouch might be something to consider.
As for recommendations, You would need to find someone who does LOTS of these surgeries as the expertise/experience of the surgeon is a paramount factor. You should consider places that specialize in bladder cancer such as MD Anderson, Memorial Sloan Kettering, Stanford University, USC, or Johns Hopkins to mention a few.
You should also explore the doctor’s knowledge/experience with intersitial cystitis.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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