What is Life like after Bladder Removal?

Hello @ricardin2 . My husband had a neobladder surgery at Mayo in 2021 and unfortunately suffered through many complications and procedures to correct all the issues. Since March of 2024 he has needed no more surgery, just yearly monitoring and is cancer free. His was aggressive and muscle invasive. He must catheterize himself 3 times a day but is continent through the day. He wears depends at night and used a bed pad as a full bladder is prone to leaks. He is very glad to not deal with an ostomy despite all the issues he has faced. Catheterizing becomes an easy way of life and you learn to just keep all the necessities in stock. You can find my series of comments here under my profile: https://connect.mayoclinic.org/member/00-c9c331d48a4f213880292/#:~:text=Experiences%20with%20neobladder%20surgery%20for%20bladder%20cance

I had a papillary tumor resected and also have CIS. Can you direct me to any studies/reports about papillary/cis combo?

Thanks so much for the feedback. I'll be making the decision soon.

Rich

I do wish I had some good advice but my experience is with my huband’s urostomy with external stoma.

I just had my RC and neobladder surgery on 11/7/24. I'm 55 yo and female. Mine was muscle invasive (no real choice for me but a RC). I am very pleased though. Shocked, really. I've had no problems. No infections. I think even my oncologist has been surprised since he practices with a hospital that doesn't do the neobladder surgery at all. I rarely have incontinence issues now. I don't wear any protection at home but because I'm nervous I wear a small pad when I am in public to ease my worries just in case. It took a full six months though so some patience is necessary but I knew ahead of time that would be the situation. I had the best neobladder surgeon in my area. I think the surgeon is key to your success.

I'm not sure how neobladder success compares when it comes to women vs. men. I can tell you I do my pelvic floor exercises religiously though. Even now so I don't have problems. I'm extremely pleased!!! I've been blessed.

Colleen
Thank you for including me in this discussion so that I may perhaps become more aware of other people's experiences as well.
It has been over 2 years since I got my neo bladder. I was originally diagnosed as t1 level but after further examination by Merke I was classified as T2. My doctor at Mayo says early stage T2 even though he judged me t1 but it was highly aggressive and after much discussion we decided to opt for the neo bladder.
So after 2 years I could report that I feel really good all in all except I have ongoing incontinence problems especially at night with mucus discharge during the day of varying levels. I am just now starting to get away from diapers and just use protective underwear during the day but still wearing diapers at night. However in the big scheme of life I judge this to be acceptable and I'm grateful that I don't have to wear a bag and I'm still alive and happy.
I have had some experiences with other people who have this ongoing treatment who have decided to try to live with the original bladder. In my case I had talked to my doctor and asked him his advice and he made it sound like I would probably have to get a bladder removal eventually even with the treatments. I know many people have had reoccurrences even with the BCG treatment. However my doctor called the bladder removal the "definitive solution" and I feel better just getting the whole thing removed along with my prostate gland. In my specific case I simply did not want to have to go back to the hospital that often any other issue is I rather have this type of operation earlier than later as I'm not getting any younger. If I was able to conquer my incontinence problem I would call it a total win getting the whole thing removed and then would have to wonder why would I want to live with my original bladder and the cancer risk. Of course we all need to make our own decisions based on our own circumstances but that is my two cents worth of opinion.

@ricardin2, great questions about life with a neobladder and potential long term considerations. I'm also bringing fellow members like @katydid77 @sepdvm @bajaman @hmmm @jowilliams1 @rone1701808 into this discussion as they have experience with a neobladder.

While we wait for them to join the discussion, you might wish to read some of the experiences they shared in this related discussion:
- Experiences with neobladder surgery for bladder cancer https://connect.mayoclinic.org/discussion/bladder-cancer-and-neobladder-surgery/

@ricardin2, have you decided to go ahead with the neobladder?

High grade is high risk for progression. Especially with multifocal or large tumors. And definitely when papillary + CIS and/or rare variants.

Too early to tell if BCG is effective. I did my first round of six-week treatments and awaiting results of biopsy. I"m just wondering about RC because Deion Sanders' opted to do it, even though he had non muscle-invasive, high grade cancer like me.

There is actually a prescribed maintenance schedule for BCG treatments when BCG has been successful after the first 6 weekly treatments. It entails 3 weeks (3 treatments) of BCG every 3 months over more than a year. Look up on line for the schedule. Periodic scoping is part of that process.

BCG success rate is around 70%. DOCE/GEM is an alternative. There are also other trials. Plus IMFINZI has been approved in combination with GEM-CIS as neoadjuvant prior to RC.