What side effects did you experience after salvage radiation?

3 1/2 years after my surgery,I had 8+ weeks of salvage radiation. I had it done in the morning and immediately went to work at my clients offices. I never had any side effects of any type until almost 6 years later when I started having incontinence problems it has gotten worse over the 6 years since radiation.. That could’ve been due to the surgery or the radiation or both.

They do it in a shorter time now, for most people, and as a result, you get more radiation every time and it does cause some people urinary problems and diarrhea sometimes. The problems are almost always temporary.

3 1/2 4 x 612

@jeffmarc thank you!

@abinoone
My statement should have read I have had the incontinence become worse in the six years since it started happening, which was six years after I had radiation. So it’s now 12 years after I had radiation And I’m going to get an AUS soon (Artificial urinary sphincter).

@jeffmarc Do you happen to know why - scientifically - incontinence issues would occur six years later? That seems like an awfully long time. I'm wondering if it is due to the RT or due to RT and aging as a natural process. Thanks. Steve

Hello, My salvage radiation 6 yrs after surgery has left no SE’s as of now, one full year after treatment (with ADT). But that could change in the future; radiation sensitivity varies highly from patient to patient and to date, it is still unpredictable.
But the fact that you are ‘partially incontinent’ from surgery ( stress? Lifting?) ‘could’ make your SE’s more pronounced. But what can you do - not do the SRT?
When I saw the list of all the possible SE’s from SRT, I thought - “OK…or die from metastatic prostate cancer”. Wasn’t much of a decision for me after that.
Phil

Having experience with undergoing radiation is still useful —> Remember that with radiation, anything it doesn’t hit won’t be affected.

With your plans for salvage radiation, do you know - as much as is humanly possible - exactly where the sites of recurrence are?

> if the radiation doesn’t hit your intestines, colon, or rectum, you shouldn’t have any bowel issues.

> if the radiation doesn’t hit your bladder, sphincter(s), or urethra, you shouldn’t have any additional incontinence issues.

> if they can avoid radiating your penile bulb, that may also be beneficial.

Work with your radiation oncologist to avoid any other organs or tissues at risk (again, as much as is humanly and technologically possible).

I’ve attached the list of radiation-induced side-effects that my RO and I discussed. Some may still be applicable to someone heading into salvage radiation for the first time.

(I have not had surgery - only proton radiation for initial treatment. But my RO and I spent many, many months discussing potential radiation-induced side-effects, and methods to avoid/minimize those risks.)

@brianjarvis thank you! Very sound advice.

After RP in Aug 2022, post-op confirmation of G 9 and addition of EPE, my post-op PSA was a "failure" at .19
My salvage radiation treatment (SRT) from Feb - June 2023 consisted of 37 sessions (about 8 weeks ) of IMRT 1.8 gy each (66.6 gy) to the prostate region, with 25 of the sessions including the pelvic lymph nodes (45 my total).
Additionally, 4 mos of ADT.

I had bowel issues, diarrhea and rectal discomfort/pain, particularly over the 2d 4 weeks of treatment.
My post RP continence was really good, for which I am really grateful, and I did not notice any significant change during treatment.

And all radiation SEs resolved w/in 2 - 3 weeks after completion of the radiation portion of my SRT in May.
And at a subsequent unrelated screening colonoscopy, my Gastroenterologist reported that my colon showed no signs of damage, for which I am also very grateful.

ADT was a different story: Primarily fatigue, which mostly resolved about 6 - 8 mos after finishing ADT in June.

Advice: The "mostly empty rectum and mostly full bladder" was a challenge to manage, and different men have had different levels of difficulty, but everyone finds their own way through it.

Personally, I prefer the "low dose, longer term" radiation treatment even though it lengthened the process (some might say "ordeal"). And I traveled over an hour each way, every day, to receive treatment at Johns Hopkins. My choice, although the time and distance exacerbated the challenge.

Payoff has been excellent so far: over 2 yrs of undetectable uPSA tests < .02 and Testosterone has returned to pretreatment baseline ballpark of 439.

Best wishes for successful SRT.

@michaelcharles thank you ever so much! I am so glad to know that you're doing well, which gives me encouragement to know. Thanks again.

@smoore4
No idea why it occurred but Medical literature shows that it is a possibility that this could happen.

I had no incontinence after surgery, Not even when they took the catheter out. I had no incontinence after radiation. Both of those treatments can cause somebody to have incontinence later in life. It is not a guaranteed long-term issue That someone will have incontinence following surgery and radiation. A certain percentage of people will have it happen.