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Radiation destroyed my bladder.

Posted by randyn @randyn, Aug 25, 2022

Failed prostate radiation treatment caused urine bag to fill up with blood etc. and reduced bladder capacity to just two ounces.
Urethra irreparably blocked and damaged.
Is this considered bladder cancer?
How long can I subsist on a Cystostomy tube and bag?
Asymptomatic antibiotic resistant UTI which is not treated by antibiotics will remain present.

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thmssllvn | @thmssllvn | 1 day ago

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.

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dandl48 Dave | @dandl48 | 13 hours ago
In reply to @dandl48 "When I had the SBRT 5 treatments over 10 days 2 years ago, the Dr inserted..." + (show)
@dandl48

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.

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

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westernflyer | @westernflyer | 7 hours ago

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.

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ldimm | @ldimm | 5 hours ago
In reply to @sansman "I too had radiation get into my bladder. It took about 18 months for the problems..." + (show)
@sansman

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

Jump to this post

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!!

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sansman | @sansman | 4 hours ago

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

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