Has anyone here completely overcome Radiation Cystitis or Radiation Urethritis for the long term?

[Lyubov]

Asking because my hubs is having 2nd bout in less than 1 year. Urologist is repeating same procedure of dilating urethra using successively larger catheters every two weeks with Foley 24/7 apparatus. Last bout, hubs started out with bleeding & blood clots. This time, no blood at first, just had hard time doing the daily self cathing. But now, after the Foley cath size was changed out from #16 to #18, blood & small clots are in urine.

I fear it will never be fixed. My understanding is that the damage is from IMRT he had in early 2016 (along with ADT) for recurrence following RARP (4-2014).

Also, he appears to be having another recurrence; very low psa but doubling every 4 months. . .

I'm a nervous wreck

[Spyder54]

Injury, hematuria, or infection are known to cause PSA to rise. Hopefully the doubling time is longer than calculated. A PSMA or CT scan would show any significant clinical progression. Gosh I hope you get some good news sooner than later. In the meantime, you being a nervous wreck is bad for both of you. If you can find a quiet place, and just breathe, listen carefully to the sounds around you (a bird, the wind thru the trees, a ticking clock), breathe slowly “in with the good air, slowly….out with the bad”. Just for 5 minutes. Quiet the mind. I promise it will help to lower your anxiety.

My best to you both,

Mike

[Lyubov in reply to Spyder54]

Thanks for the breathing technique. I've tried different types, but like this especially with the aid of the "in with the good, etc." He sees med on next week. I'll ask for a more sensitive scan.

[bluepacifica]

My husband had bloody urine on and off for years. Around 2006, he had a clot that was closing up his urethra. He headed for the ER since his bladder was about to burst;. While he was lying down, the clot must have settled and allowed the urethra to pass urine. And pass it did!! I was grabbing everything I could to sop up all the urine that was flooding everywhere. Les gets bloody urine when he starts a UTI. Bactrim takes care of it quickly. Don't panic, Lyubov, it's not that uncommon.

[Lyubov in reply to bluepacifica]

Thanks for sharing. I believe my hub's situation is beyond what your man has been dealing with, and appreciate your encouraging words. My guy is at a more advanced stage, is what I meant to say. But we'll keep trying to get it under control! Thanks again.

[PwSher]

Google urethral stricture. The literature says if it is not cured after one expansion treatment, a surgical treatment can be very successful if there are only 1 or 2 strictures. I had the expansion done twice before I found a stricture specialist.I had one more direct cystourethroscopy with the surgeon where also injected a steroid. The next time my flow slows I will be admitted for a urethroplasty for my 2 close together strictures.

Best of luck.

[Lyubov in reply to PwSher]

Thanks for explaining your treatment(s). The first time it occurred my husband had a scan that showed thickening of bladder. It thus seems his involves the bladder, I guess where urethra connects? He's also had the cystourethroscopy previously. He sees urology next week & I will bring this up.

[lrgalla]

LyubovSo sorry to hear your news and to give you some ideas and perhaps hope here is my contribution In 2014 I was experiencing gross haemateria due to radiation cystitus of the bladder. I was emergency lifted by plane on two different occasions for medical care at larger hospitals. I had hyperbaric oxygen treatment for a couple of months without success. Scans showed a nucrotic bladder breaking down and causing blockages with tissue breakdown. I also had prostate cancer cells among the tissue in the bladder. Finally I had salvage surgery with my bladder removed and a urostomy stoma fitted, They removed what was left of my prostate tissue, appendix and lymph nodes. That surgery changed my life and gave me new hope. Since 2014 I have had little problems only using the stoma and it has allowed me freedom from catheters and incontinence problems. I am still being treated for PCA with Chemo at the moment but I have enjoyed the past 7 years thanks to the surgery. My full story should still be in the files in my old posts. Good luck with it all and God bless.

Lee Gallagher

[Lyubov in reply to lrgalla]

Thank you, Lee, for sharing your harrowing experience. I know others have had surgery such as yours, I doubt my husband (78 yo) would be strong enough physically to endure it. I hope it will not be necessary. . . We are also watching his PSA, which had been doubling every 4 months, but the most recent (yesterday's) number went down. The oncologist wrote "looks good." We see him next week. . . Best wishes to you as you continue with your treatments.

[lrgalla in reply to Lyubov]

LyubovThank you for your reply I pray things will work out for your family please keep the news coming for all interested members. Please feel free to contact me if you feel the need.

Lee Gallagher

[Hidden]

I hope your husband finds relief. I have to confess that the many stories of post radiation damage that I see is making me reluctant to go down that road.

[Lyubov in reply to Hidden]

May you be spared!

❤️