What is Life like after Bladder Removal?

Many patients do fine long term with neobladder. Some have complications. Some have recurrence. Many never become fully continent but manage that within reason.

I would focus on the near term personally and not obsess about the future. Nothing is guaranteed.

There are support groups. You can check BCAN and their forum (Inspire) for more insights.

Thanks so much for the feedback!

Hi mate,
Can I ask you please.
Is it because bcg treatment was not successful?
Non muscle is usually controlled by bcg?
I did my second one this week.

While I cannot tell anyone what to do about going to a Neo bladder. You need to do what you think is best for you and with your doctor. I would get a second opinion before I would do that surgery.

For me.
I had the same bladder cancer and had the BCG treatments. My doctor did discuss with me the possibility of going to a Neo-B after the 3rd surgery. I told him I want to do everything possible to avoid getting the bladder removed. Luckily my last checkup and biopsy showed no signs of cancer. We shall see how long this will last. I will get a second BCG treatment in a couple months. Doctor said it is cautionary treatment just in case of any cancer cells are present. I totally agreed to do that.

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.

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.

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.

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

@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?

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.