What is Life like after Bladder Removal?

@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.

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.

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.

Thanks so much for the feedback!

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.