Radiation urethritis lead to Hydro-nephrosis - ? nephrostomy tube

[CJ4J]

Both of my dear husbands ureters were damaged from pelvic radiation from a year and half ago and caused about 3 inches of ureter scar tissue to the kidney which lead to both right and left kidneys to now have hydro-nephrosis. He has been in so much pain for the last 3 months. Over the last 5 1/2 years of battling Advanced PC, he would say "I really have no complaints" Since July he has been in constant groin and kidney pain and say's I can't say I have no complaints anymore.

They inserted 2 stents in September, one in his right and one in his left ureter. My husband Larry said he got a 2 for one special. He still has some humor left 🤣 but this has not relieved his pain and he is very very uncomfortable and is on pain meds 24/7. He is still peeing blood on and off and the Dr. said he will need to have these replaced every 3 months. If he doesn't want to keep the stents , then they will remove stents and watch his creatinine levels. If his creatinine increases at that point, then they would then place a nephrostomy tube. Both solutions seem to be no fun. What experience does anyone have with stents or a nephrostomy tube?

Current status on PC fight - Jevtana/Carboplatin chemo treatment has been halted since July due to low platelets, completed 5 of the 6. In September he got SBRT to a met on his collar bone but waiting for his blood counts to recover to resume or try something else. They left a small met of L5 and pelvic bones alone as they are in the vicinity of the ureter damage. Last PSA was .28 in September, but he has always had low PSA's. He also developed DVT in his leg in many of the veins, now on blood thinner. The PC fight is getting real now with so many side effects from all of the many treatments. Trying to keep his spirits up the best we can, with trips out of the house for ice cream, playing his favorite music loudly and watching funny shows.

Appreciate any advice and your thoughts on what you would do? You'll have been a daily source of help for many years to us. We first learned about Lut-177 from you'll and successfully got that treatment in the vision trial. We read your posts daily and are grateful for each of you warriors and care givers!!!

[Lyubov]

My heart goes out to you & especially your poor husband who is in such pain. What I refer to as the worst "delayed sideo-effect of radiation therapy" seems only lately to be in discussion. When my hubby had his in 2016 it was hardly mentioned as a possible down the line problem. Yes, my hubs is now in his second bout with it, but not as grave a situation as yours. His has been somewhere in lower bladder initially with lots of bleeding/clots, etc. Foley, etc., and it's back again, another Foley, etc. But what your hubs is experiencing is truly scary. I pray they can do a repair that eliminates the pain & stops damaging kidneys. You may find some posts here & info online by searching for "radiation cystitis." Bless you both.

❤️

[CJ4J in reply to Lyubov]

Lyubov, Thanks our thoughts exactly. Will do more searching here. Have read the ones of late. Just trying to make the best decision with the least pain.

[Hidden]

You’ve both been through so much in 5 1/2 yrs . 🙏

[CJ4J in reply to Hidden]

Thankful for each day!!

[Hidden in reply to CJ4J]

Us too! Over six years . 🙏❤️

[Shooter1 in reply to Hidden]

You didn't expound on your mess Lulu700. She will have to go read your old posts. Even this can be overcome. I'm hoping for no delayed results from my July radiation treatments. My sister in law has recovered from horrible nasal cancer but has had problems with the gift that keeps on giving that we call radiation therapy. Keeps us going and I'm glad it's there, but damn tough sometimes. Best of luck and know we are all pulling for you CJ4J.

[CJ4J in reply to Shooter1]

Thank you Shooter1!!

[tango65]

I am sorry to hear about all these complications and associated pain.

Perhaps you may be interested in knowing that ureters could be reconstructed. I am not familiar with this issue but a Google search shows multiple options for reconstruction:

google.com/search?q=uretera...

PubMed search shows a lot of published data.

pubmed.ncbi.nlm.nih.gov/?te...

Best of luck on this journey.!!

[CJ4J in reply to tango65]

Thank you very much Tango, that gives us another idea to ask the Dr about. His damage is about 3 inches on each ureter and close to the kidney. We really appreciate the time you spent on the research.

[tango65 in reply to CJ4J]

Least I can do. Best of luck.!

[j-o-h-n]

Where are you located? I had stents in my left urinary tract (in and out every 3 months) with no pain and not noticeable. Make sure doctor gives him antibiotic when going in and out (CIPRO). My Urologist was an expert on urinary stents.... If you're in NYC I can recommend him if he's still active.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/13/2021 8:18 PM DST

[CJ4J in reply to j-o-h-n]

John, we are located in Kansas City. Thank you for sharing your experience. He went to a local teaching hospital. I read the surgery report and an resident seems to have done the surgery. We have an appointment Monday with the surgeon to go over all options. I will definitely ask about what you mentioned.

[j-o-h-n in reply to CJ4J]

God speed on Monday.......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/13/2021 9:58 PM DST