Radical Cystectomy: Would like to hear the experiences of others

Posted by sue225 @sue225, Sep 29, 2021

My husband (79) who has had bladder cancer for 17 years must now have a radical cystectomy most likely before December. Would like to hear from others who have undergone this surgery (recovery, etc.) and how they have adjusted to living with a bag. (Neo bladder not a possibility due to prior radiation for prostate cancer which thankfully is a non-issue now).

Interested in more discussions like this? Go to the Cancer group.

I underwent a radical cystectomy in Sept., 2018, w/complete removal of prostate and surroundiing lymph glands. No problems with ostemy bag. Suggest hyper awareness of hygiene re: bag changing and emptying. I carefully use anti-microbial wipes.

In spite of standard chemo/immunotherapy from surgery get-go. cancer has metatasized to lung, liver, and spine. Tried Padcev immunotherapy that appeared to work but then didn't. About to try Trodelvy……criteria: efffectiveness and side effects toleration.

I realize that my disease is incurable at the moment. Buying time is my mission.

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