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Radical Prostate Surgery/Salvage Radiation with Cystitis

Posted by conchman @conchman, Nov 24 10:21am

Looking for information from patients that have major radiation cystitis from salvage treatment after radical prostate removal that involves decisions on Cystectomy.
Can’t find anything that doesn’t include having bladder cancer as reason for removal. I don’t have BC but have so much radiation tissue damage that surgeries haven’t been successful in repair, thus, the decision whether to have bladder removed. ( Ileal Conduit).
Looking for patients outcomes after, what to expect, follow ups, quality of life etc. Thanks in advance.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 1 3:15pm

@conchman, I'm tagging a few other members who have experience with radiation cystitis like @delcasa @northoftheborder @brianjarvis @hector13 and others.

I wonder if this existing discussion in the Prostate Cancer group might have some useful info for you:
- Cystectomy yes or no?
https://connect.mayoclinic.org/discussion/cystectomy-yes-or-no/

REPLY
northoftheborder | @northoftheborder | Dec 1 3:49pm

I'm very sorry to hear about your news.

My radiation cystitis after 60 gy of SBRT (no prostatectomy) was dramatic — peeing what looked like pure blood, a few months of incontinence (afraid to leave the house at times), and a long sequence of UTIs in 2023, but it has settled down to just annoying pain now, and a cystoscopy showed the damage is confined to the lining of the bottom part of the bladder.

Your situation sounds much rougher. I take it they've already tried the easy stuff like hyperbaric therapy, and that the damage is structural (beyond just the lining).

All I can offer (beyond my sympathy) is that it's definitely worth seeking out a second opinion from another urology oncologist — perhaps there might be one who thinks that reconstuctive/preserving surgery is still possible.

Best of luck, and you know you'll find care and support here in the forum, whatever path you end up on.

REPLY
budisnothome | @budisnothome | Dec 2 9:55am

I have had lots of complications. Had it all done. I found a urologist in St. Paul, MN that specializes in radiation caused urology problems. I was looking at an ostomy bag for life. He has seen a lot and been able to help a lot of people. Way too long of a story to post but look for a specialist in your area. They can help. It is amazing what can be done today. My story has so far ended in my second AMS 800 and it works great. A long road to get there but worth it. Keep looking. Someone out there can help you. Boston Scientific makes the AMS800. Their website has a customer service division. I started by asking them for a name in my area, and that is how I found my surgeon. Keep looking. Don't give up.

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