Change in Incontinence after Salvage Radiation

Posted by gkm @gkm, 21 hours ago

Incontinence after Salvage Radiation
I had a RP in May 2018 and while my PSA post RP was undetectable, I did suffer from fairly significant incontinence issues during that first year. I was using a kegel specialist and although my incontinence did improve, I was still using a Depend and 2 maximum pads per day, although I was dry overnight. My urologist recommended the AUS device but I found the idea repugnant and indicated that I could live with my current state of incontinence which by April 2021 had dropped to 200 grams of urine per day. The bad news was that my PSA began to rise and by January 2022 had reached .370 and after a PSMA-PET scan I agreed to have 33 days of Salvage Radiation, finishing in July 2022. The SRT dropped my PSA to undetectable, where it still remains which is a real positive. My incontinence generally remained in the 200 grams per day range although it bumped up to the 300 gram range after my first ADT shot but after the completion of the 33 Salvage Radiation sessions it dropped to as low as 100 grams per day for 3 months but then rose back to the 200 gram range through all of 2023. In late January 2024 it spiked at 400 grams per day and it has remained at over 300 grams per day with the odd spike of 400 grams throughout all of 2024. Because of this regression, I got frustrated, became less diligent in my kegel exercises and generally felt a bit depressed. Yesterday when I visited my kegel specialist, I expressed my frustration and she commented that there have been studies that indicate after salvage radiation you can have a relapse in your incontinence issues; 6, 12, or 18 months after the end of your SRT so it is important to keep doing your kegel's even though it seems that things are deteriorating. Based on my experience it was almost 18 months to the day when things seemed to go sideways. I sure wish I knew this earlier as I would have been much more diligent in focusing on my kegel exercises. Here is the link to the study; although I could not activate it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6019864/

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Don’t beat yourself up over freakin Kegels! Sure, they are very helpful but your urinary tract has been heavily violated both surgically and by radiation. There are things going on inside your body on a microscopic level that are totally unknowable by any form of analysis or measurement.
It’s bad enough that you have to be burdened with this terrible incontinence - you don’t need guilt for doing something ‘wrong’ on top of it. Even if done diligently and perfectly the Kegels are no match for a surgical robot and sizzling electrons burning your insides, OK?
Please give yourself a break and perhaps see if there is anything else that can be done. There have been many discussions on this forum about urinary slings and other corrective measures that might correct the problem.
Good luck going forward snd remember to be kind to yourself!
Phil

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