Radiation destroyed my bladder.

Those contemplating Stereotactic beam radiation therapy (SBRT) should obtain a genetic test called PROSTOX. It costs $500. Insurance does not pay yet. 10-15% are predisposed genetically for delayed urinary tract symptoms.
[RTOG greater than Grade 2 ?] The test determines if you are in the 10-15% HIGH risk group or LOW 5% average. SBRT can also be given once weekly times 5 weeks. This should further reduce that 5% incidence? The total dose is the operative issue not the interval for the treatment. Th spacer is important and the experience of the team too. Consult the PCRI.org You Tube videos created by a medical oncologist who has no conflict of interest.

I forgot to add that it will be 5 years this September with no problems with bladder, colon, etc.

Proton radiation therapy at Loma Linda Hospital in 2010. 2.5 months of mornings. Never a problem..never any after effects from proton radiation therapy. From reading all these years, it appears a low dose, but it is the best option over a long period. Strong radiation often appears to cause "burning" of tissue over a short period.

Loma Linda was the pioneer in proton radiation therapy initially "invented" for targeted cancer in children with brain cancer. As such, the reason why small doses of radiation were the standard.

My husband has an open and close valve on his supra pubic. It doesn't sound like you have one. Maybe check into that to stop leakage. Then you can open it and pee. Best of luck!!

That makes a lot more sense now.
I had the Supra Pubic for 10 months, the bladder spasms would bring me to my knees, but I kept it long enough to allow my urethra to heal somewhat.
Thanks for the reply

Hi randyn, Sorry to hear about your long term affects of radiation. I had a similar experience. 2017 I had 5 weeks of tomotherapy radation followed later with Brachytherapy for prostate cancer, gleason 7 and 8's. For 5 years I was doing fine until one day I find myself unable to urinate. That was quite an experience I do not want to repeat. Found out my Urethra at at the bladder neck was scaring over. Tried 4 laser and balloon surgeries to open my urethra. All worked but for short periods. 3 - 5 months plus I had to self cath at least 2 times a day to keep things open. Come to learn that all that work causes incontinence. That got so bad I gave up and went to a supra pubic catheter. I have had it over a year at this point. Much better solution than the surgeries but I had to try them as I was hoping to be normal again. The SPC is manageable and I can play golf travel and live a fairly normal life. Regarding your UTI's I finally was given an antibiotic that cleared up what they called colonization of bacteria in the bladder. So their is hope. One major positive. I sleep all night and do not get up once to pee until morning and then it is just emptying the night bad. Best wishes. It can be a challenging journey.