While I don't have any symptoms (yet), a CT scan and ultrasound tests show that the lower part of my right ureter tube is very narrow and causing the kidney to swell, apparently from restricted flow of urine through the ureter. My University of Chicago Medicine urologist suspects scarring in the ureter as a result of my radiation treatments nearly five years ago in 2019. As shown in my profile, I had 38 sessions of PBRT at 68.4 Gy, 25 sessions of PLNRT at 50-60 Gy.
I am now scheduled for diagnostic ureteroscopy and possible balloon dilation of the ureter on May 3. If there is a ureter stricture and it is "long", I have been told that a more complicated surgical repair may be needed.
I am now 76 years old and in good health otherwise.
I would like to hear from other PCa warriors that have had ureter damage from radiation and how it was resolved. Thanks in advance.
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Polaris1
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I had Proton and 3D radiation in 2009, In 2020 or 2021 my egfr went down and I went to the VA, they scanned me and it showed the left kidney was swollen and blocked. Did a cystostomy and found a stone and bad ureter, said kidney was bad but the other one was working, 20% left 80% right. Needed several other stone removal operations, then they did a flow test and found the right kidney was backing up. Did another scope and found both ureters were bad' put in stents, said I needed an operation to fix them. Did a littler research and found out there was a Dr. Jill Buckley at UCSD that was the guru of this type of operation. The San Diego VA got me a consultation with her. She scoped me and said yup they're bad, have to go in and if we're lucky just shorten them up and reattach them to the bladder, if not have to use either your appendix or tissue from your cheek to rebuild them. Operated on Dec. 12, 2023, was blessed that she could just shorten them up and reattach. Had a catheter for ten days and stents for 30. Had bleeding and clots from the bladder. Had 30 HBOT treatments, after stents came out no more bleeding since but it worries me. Plugged up twice during the time before stent removal, went to ER for catheter. At this point if I didn't know I wouldn't know, everything is fine except for getting up several times at night to pee. I am a Vietnam Vet and have several Agent Orange related problems, this has been one of them but thanks to Dr. Buckley and my faith in God, at almost 80 I'm still mobile and doing better than most eighty year olds that I know.
Thank you very much for sharing your experience, which is both frightening and reassuring.
How soon after the December 2022 surgery did you have the hyperbaric oxygen treatments and over what period of time? Was this to promote healing of the bladder and ureters?
I started HBOT on Dec 27th, still had the stents, catheter came out on the 22cnd, still occasional bleeding until the stents came out on Jan 10th, no bleeding since then, had 30 HBOT total, five days a week, very easy to do, got to be a fan of Gunsmoke since that was what I watched on the TV located outside the tube every treatment. HBOT messes with your vision some, think I got a few more floaters from it to add to the bunch I already had, don't know if it made my cataracts worse or not. I think the treatment was for both the bladder since I told them I had had a problem with that but I'm sure also to promote healing from the surgery. My vision has mostly improved, the VA says I might have some threat of Glaucoma but they said the HBOT didn't cause it. It may not sound like it but I'm doing well even though the other day I realized I go to seven different doctors for various things through the VA and UCSD. But if I stay like I am now I'm beyond happy. Hope everything works out for you. I had the robotic surgery and I would sure recommend that, one night in the hospital and no pain at all ever. Hope this helps, all in all it sounds like they have caught your problem early and seem to have the right idea what to do about it, I hope what ever you do works out as well as mine has so far at least.
Yes , I'm rated 100% but my total ratings add up to 220%. 10 on tinnitus, 30 on PTSD, 40 on prostate residuals, 40 on radiation damage and 100 on Lymphoma. I'm a walking disease pit but still walking. The Lymphoma is not causing problems right now but it probably will eventually and then the chemo could hurt my kidneys even more so every day is a blessing and I try to treat it that way, prayer and Xanax are my go to things to keep me going.
keep fighting the fight. I have a friend with PC who is also a Vietnam Vet and helps other vets get all the benefits to which they're entitled. Sounds like you're on top of it.
My take on the VA is it has two parts, one the medical part that does everything they can to help you, my care at San Diego VA has been first rate, they are attached to UCSD medical school so that helps. The other part is the administrative part that does everything they can to deny your benefits. You have to be proactive and use the VFW or your veterans service officer (VSO), the one in my community is great and has helped me immensely.
Hmmm…my husband completed 28 treatments of IMRT last month. His only “side effect” was/is a narrower urine stream and the need to get up twice at night/early morning vs once. I sure hope this doesn’t evolve into something more serious like what you described. Best of luck to you finding the right treatment for it.
I have always had to get up at night, radiation made it a little worse but I don't think what you describe an unusual outcome but I would certainly mention it to the doctor in case he would want to do a kidney function test.
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