Cystectomy yes or no?

Posted by sansman @sansman, Sep 8, 2023

I am a 63 year old male who had a radical robotic prostatectomy in the fall of 2017, did the radiation in early 2018.
Everything was good for about 18 months, then I started to pass blood, then started passing pieces of my bladder.
Had to go to the ER and Dr’s office numerous times. They showed me how to “self-cath” so I did this for the next 3 years, it got to where I was cathing more than 30 times a week.
Having to self-cath at work became a problem with all the UTI’s. (Warehouse environment)
I took early retirement in late 2021 because of the stress increase due to a change of management.
I had a Supra Pubic Catheter installed in June of 2022, this did get my bladder to quit “peeling” but the spasms were horrendous. Took it out in March of this year after the doc said my bladder was “the best he has seen it look.”
No stones or cotton candy, (his words not mine) .
I have had to self-cath a few times since.
The scar tissue and neck constriction is my problem.
The bottom line is my doc says the only thing he can do to give me at least some improvement in my quality of life is to do a cystectomy with an ileal conduit.
Doc says the radiation did too much damage to do anything else.
I’m looking for ideas. Not real fond of wearing the bag full time.

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budisnothome | @budisnothome | Sep 9, 2023

Hi. Sounds like we are bothers in this season of life. I have been thru the same. I had radiation and it caused radiation cystitis and radiation proctitis. I had 40 hyperbaric sessions to stop the bleeding. I was a parts manager at a ford dealership. I was self-catheterizing almost every hour. I had the AUS installed December 2021. caused problems with a long story. I had emergency surgery to have it all removed. The cuff had eroded into my urethra. I had suprapubic catheter inserted dec 2022, to let my urethra heal, and exchanged every 4 weeks. I had urethroplasty in april 2023 to repair urethra. I need to do 20 more HBOT before surgery to put the AUS back in. Mayo Connect has a group for ostomy patients. It is on zoom but not recorded. There is an ostomy website http://www.ostomy,org that has a lot of information. If my AUS fails for the second time I will also be on a bag for life. Can your urethra be repaired? My bladder is like yours, not much there and sheds stuff all the time, Gross hematuria is a way of life. I know many of the ED staff because I am there so often. I once went to PCP and had an ambulance ride to the ED. If can get worse. One day at a time. We could talk for a long time but there may be options for a short time before bag for life. I may get another 6 months if I am lucky. Good luck with your journey. There are many urology doctors out there and maybe a different doc can give you some hope. I found one who specializes in radiation caused urology problems and has given me some hope for a few months. I wish my bag for life was filled with golf clubs, not urine.

sansman | @sansman | Sep 9, 2023

Talk about brothers in life, I was selling Ford wholesale parts for thirty plus years before being forced to retire.
My urologist at the time set me up for the HBO treatment, at the time I couldn’t see any way to spend four hours a day in there and the available info at the time was not promising.
The Suprapubic did help my bladder heal, I have not passed any blood or “debris” since taking the SPC out in March after ten months.
I have been thru a few urologist since all this came about, even traveled to a different state to get an opinion from a highly rated Urology Department.
It never seems to end.
If I’d been ten years older when this began, I think I would have rolled the dice and let it ride.
Thanks for your input and good luck on your journey as well.

budisnothome | @budisnothome | Sep 10, 2023

Wow. How funny. I was 69 when it all started. If I had known how bad radiation is and how much damage it does I would not have done it earlier. One day at a time.

sansman | @sansman | Sep 10, 2023

Amen brother amen

Colleen Young, Connect Director | @colleenyoung | Sep 22, 2023

@sansman and @budisnothome, I thought you might also appreciate this related discussion in the Kidney & Bladder support group:
- Radical Cystectomy: Would like to hear the experiences of others
https://connect.mayoclinic.org/discussion/radical-cystectomy/
There's also an ostomy support group here on Mayo Clinic Connect if you want to talk to others:
- Ostomy support group https://connect.mayoclinic.org/group/ostomy/

Sansman, did you decide whether or not to have a cysectomy?