Looking to connect with people who had Cystectomy & Neobladder

Posted by mgb007 @mgb007, Jul 22 11:35pm

Hi, I am a 63 year old physically fit male. I would like to talk with similar patients who have has cystectomy and neo bladder procedure. I was diagnosed with high grade bladder cancer in April 2023. I underwent the removal of 3 tumors followed up by BCG treatments. 3 months later another Low grade tumor was discovered and removed followed by more BCG treatment. I went 6 months clean and then another high grade tumor was discovered last week and removed. I am now at an extremely scary fork in the road. The removal of my bladder and prostate and a neo bladder constructed. Option 2 is stopping BCG & undergoing Gem / Doc chemo treatment in my bladder which I am told is a 50 / 50 proposition. I would love an opportunity to speak to patients who have had the cyctectomy / neo bladder surgery because right now I am lost..........this is all after I lost my kidney to Papillary Urothelial Carcinoma 2.5 years ago.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

DAVID B. | @davidpball | Jul 23 6:03am

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

Robert Steen | @steenrl | Jul 23 9:54am

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.

Sue, Volunteer Mentor | @sepdvm | Jul 24 9:25am

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.

walpi1945 | @walpi1945 | Jul 27 5:10pm

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

Colleen Young, Connect Director | @colleenyoung | Jul 30 9:29am

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?

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