Radiation destroyed my bladder.

Hi @randyn, how long ago did you have radiation? It sounds like a second medical opinion might be a good idea.

Thanks for suggesting. A second opinion is always valued.
Radiation was Feb/March 2021.
Strictures in urethra immediately blocked and damaged it. Before a graft could be constructed, bladder
shrank & capacity was 2 ounces.
Started hormones Sept 2021 and blood/tissue had filled bag for months. What options are possible after yearling hormones stop working? I am comfortable with the care that I received and believe the outcome could not have changed. Thank you again.

My husband had Proton therapy in 2009 in Jacksonville FL. He is in remission but after 8 yrs he started to have bladder issues. Bleeding is the most common side effect of Proton therapy and it could be rectal or bladder. He went through ablations and urinary retention many times. Mayo Clinic in Jax diagnosed him with Radiation Cystitis due to Prostate cancer treatment. He was recommended to have Hyperbaric Oxygen Treatment because the bleeding in the bladder was difficult to stop. He had 80 treatments and his bladder healed. It doesn’t mean he was “cured” from his diagnosis because he still has the bladder affected but he is not bleeding. He just drinks lots of water and doesn’t lift heavy stuff. His quality of life changed a lot after being diagnosed but he is taking one day at a time. The oncologists in Proton Institutes don’t mention it but it happens. Hope this helps.

Sorry to hear those stories....maybe some others have had the same experiences or fears they will...

I had the hyperbaric treatment but did not stop the bleeding. Can I live with it

Hi @deweyandme, welcome. What type of cancer did you have? Have you talked to your oncologist about the continued bleeding?

Same here! After 14 years from the radiation I had massive blood coming and after two weeks in the hospital I got a Supra pubic catheter. Now there are close to five years living with pain.

When I had the SBRT 5 treatments over 10 days 2 years ago, the Dr inserted a SpaceOAR Hydrogel along with carbon markers. The Gel supposedly helps protect the rectum and bladder from radiation.

I had proton radiation therapy for prostate cancer 11 years ago. Urinary pain and issues started about a month or so after treatment was finished (also had bowel issues). To this day I still have urgency issues and constant pee pain. I did Hyperbaric twice.The first time I had relief for about six months, but it came back. Tried a second time and no relief. MD Anderson gave up trying to solve the issues, so I am on my 5th Urologist trying to get relief. So far, no joy.

I too had radiation get into my bladder. It took about 18 months for the problems to start. Blood in the urine, then started passing “chunks” of bladder. Doc then did my first cystoscopy, many since. I was having to self-cath 8-10 times a day for about 18 months before getting my Supra Pubic Catheter, this allowed my urethra to heal somewhat, only having to cath 2 or 3 times a month but that only lasts 3 to 4 months and gradually the self cathing increases til it’s time for another cystoscopy and it all begins again.
I also went through 4 urologist in two
states looking for answers that made sense to me.
I was forced to retire early because of all this and I have been through a hell of a lot pain and discomfort but I am alive.
I still get up 7 or 8 times a night to pee, I still where 4 or 5 depends a day, but I am alive. My journey has a few more peaks and valleys, but I’m alive. H
You got dealt a lousy hand in this life, as have most of us on this site, this is a place where you get answers to your questions and support for your journey.
I could not have made it this far without my support group, and my wife has been a godsend throughout all this, I would probably not have tried to get through all this without her.
God luck and God bless,
Randy