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Neobladder

2 months 3 weeks 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. Next is cystectomy on August 15, 2018 (Neo Bladder)

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3 months 1 week ago #55773 by ic77
Hi, I have interstitial cystitis and had at first a urinary diversion (urostomy) surgery in 2005 that was converted to a neobladder in 2007. I do NOT recommend surgery for IC. I was told in 1993 that I had IC because of a biopsy that showed a lot of mast cells and ulcers. I tried all the treatments many times and kept having more pain and worse symptoms. Since my surgeries though I have incontinence during the day and night, have to self-catheterize 12-15 times a day, still have worse pain, have had bowel obstructions from scar tissue, GI hemorrhaging requiring blood transfusions, reflux to kidney and get kidney infections about once a month which are often resistant to antibiotics requiring iv ertapenim antibiotic in hospital. For IC I only can recommend gentle stretching or yoga for pelvic pain, meditation, and eating a balanced healthy diet and minimizing stress when possible. Don’t let anyone tell you it is incurable or you will get worse. There are advances in medicine all the time and surgery is permanent.

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4 months 1 week 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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6 months 2 days 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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6 months 3 days 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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6 months 3 days 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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