Looking to connect with people who had Cystectomy & Neobladder

Did your urologist discuss adstiladrin as an intravesical treatment option? That is my next course of treatment after TURBTs and BCG refraction.

I had a similar path with the exception of the kidney and finally decided on neobladder. I'm happy to answer any questions you have. Short answer, I don't regret my decision in the least. Two years on and I am cancer free and doing well.

Hello @mgb007. My husband chose to have a neobladder surgery at Mayo Clinic 3 years ago after partial cystectomy, chemo, multiple TURBTS, BCG failure, and Keytruda failure. Prostatectomy was done at the same time as is typical. He had many complications postoperatively and several followup surgeries for ureter scar tissue blockage, incisional hernias, and stone formation. He must catheterize 4 times daily . He is still glad that he did this choice with no ostomy bag and a chance at a total cure. So far so good with every 3-6 month scans. He can lead a new normal lifestyle which is acceptable to him. He is 71.
Adstiladrin was mentioned to us but not approved at the time so not an option. I feel that he probably would have chosen that route to try before the big surgery. He was in the hospital for a week initially and a long 6 week recovery due to complications. It is a huge surgery to go through. Others have had an easier time with it, but my hubby seems to get every secondary side effect that has the tiniest percentage of happening.

I am a 78 year old femail. When I was 68 I was diagnosed with BC. When it got to a lymph node, I was
advised to have a radical cystectomy. I did gp to the Mayo to talk with a Urologist. I also went to UCSF,
and decided that is where I wanted to have the BC. The choice of what type of diversion was very
difficult, as I thought I would like a neo bladder, but after talking with other active women, a cyclist and
hiker, and a deep see diver I went with the urostomy bag. And I am so glad I did. I do not have to deal
with unsanitary conditions when emptying my bag and can stand up next to a tree. It has been liberty.
I think it depends on what type of life one leads and where one travels to. One must take all that into
consideration. I am very happy with my decision. Patty Gregory

Hi @mgb007, I hope you saw the helpful comments and experiences shared by fellow members like @walpi1945 @sepdvm @steenrl and @davidpball.

MGB, did you decide on your treatment options of further chemo or neobladder? How are you doing?

I received a neo bladder in 2020. I had no problems until Jan 2026. Ever since I have been bleeding. No one can explain what is happening. Any one heard of this?

@stevendtaylor my husband has had his neobladder almost as long as you have and he had multiple complications in the first 2 years after. No bleeding or serious issues lately though. Is your medical team looking at urine cytology and doing scans and cystoscopy? Have you considered a second opinion elsewhere?

I am 6 months post-op from having a Neo bladder put in and over the course of the last two and a half months I have had four bladder infections UTIs. I am taking in as much liquid as I can has anyone else experienced this I'm not sure what else to do meeting with my urologist this afternoon.@steenrl

Sorry my friend but no UTIs for me. At least none that I knew about. Mention an OTC supplement Theralogics D-Manose to help with UTIs to your Dr.

I received a neo bladder in 2020. The BCG treatments did not work, and I could not tolerate the in-bladder chemo. I prefer the neo bladder to the original. No urgency. After the first few months of recovery, I was happy I made the decision. You can ask me anything you want. I am 65 by the way, 60 when I had the surgery.