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Neobladder

1 year 2 months ago #55839 by tmcbladder
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...

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1 year 4 months ago #55681 by swillis
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!

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1 year 5 months ago #55416 by Mayah
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.

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1 year 5 months ago #55407 by sara.anne
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

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1 year 5 months ago #55406 by Mayah
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?

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1 year 5 months ago #55401 by sara.anne
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

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