Radical cystectomy, prostatectomy appendix removal and neobladder

Posted by sunnyst99 @sunnyst99, Aug 30 8:07pm

My husband, under 60 years old was diagnosed with stage 2 muscle invasive high grade bladder cancer this year 2026.
Underwent 4 rounds of Padcev Keytruda, then radical surgery stated above now onto 5 additional rounds of Padcev Keytruda. Surgery was successful in that no cancer was found in lymph nodes etc and we are ecstatic.
Our question is is the 5 rounds of adjuvant immunotherapy always done? Are there other options?

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Sue, Volunteer Mentor | @sepdvm | Sep 2 4:10pm

Hello @sunnyst99. My husband had that surgery but not the Immunotherapy as his trial on Keytruda was not successful and years ago it was not being used with Padcev. He has remained cancer free for 5 years. I am not sure what the usual protocol is for this combination postoperatively. It sounds like a good question for your medical team. I am hoping that some patients with experience with this drug combo will chime in and help you out. When I was on my immunotherapy for head and neck cancer the protocol was 2 years and then no specific plan of action. I chose to remain on for a few more months until my oncologist felt that side effects on appetite with weight loss were affecting quality of life so we stopped. I know that more serious side effects often cause immunotherapy to be terminated early.

mikf | @mikf | Sep 5 7:30am

I had radical and Neo bladder surgery exactly 29 years ago this month. It was in the early days of neobladder surgery, and I may be the longest living survivor of this procedure. I also had clear lymph nodes.
At the time there was no such thing as immune therapy, and the chemo for bladder cancer was quite primitive, although I understand, much improved since. The oncologists wanted to administer it nonetheless, as a ‘belt and braces’ approach, but my urologist said it was my decision. It was very obvious to me that the urologist had little faith in the chemo at that time - paraphrase but I think he felt that the highly toxic chemo at that time was as likely to kill me as the cancer!
I finally decided not to proceed.
Evidently, it was the right decision, but I went thru many sleepless nights before making it. In fact it might be more accurate to say that I postponed making the decision so long, that the decision made itself.
It’s a tough call, especially since yet another option - immunotherapy - is now offered.
My only advice is to take advice from more than one source, and more than one speciality.
My feeling is that each speciality can have bias, and it’s good to get different perspectives, and if possible see the statistics.