Salvage radiation therapy after radical prostatectomy

Dear Fellow: Your post is most comprehensive and filled with empathy! I truly appreciate it...
1.As far as opinions, I have spoken with 3 rad-oncs and reviewed guidelines. They all recommend salvage RT to prostatic bed but no ADT. As far as side effects, the forum may not have posts from fellows who don't have side effects. I think I have a good rad-onc, knowledgeable and easy to reach and communicate with. He is trying to balance timely treatment and not over-treatment.
2. I love exercise and so hopefully I will continue.
3. Your point about doing what makes one happy and surround with people with positive people and live one life is so crucial...
Thank You dear...

RP in 2013. Positive PSMA PET in 2023 at PSA 0.23. Just completing 6 months ADT and prostate bed salvage radiation (X36). Here are my thoughts. DON'T PANIC. You have time to sit back, do your research and make the correct decision FOR YOU. If you read all the comments about negative side effects you will be paralyzed with fear. (I know I was.) There is no way to predict what YOUR journey will look like. My guess is the vast majority of patients have manageable side effects and don't bother to write comments or posts. 1: You have time to get multiple second opinions from top doctors at major teaching hospitals and center's of excellence. This is SO important. (I had six different opinions!) In the end I travelled 1200 miles to Mayo in Rochester, MN to receive treatment. 2: Exercise! Movement is medicine!. You don't have to run a marathon but you do have to get off the couch. 3: Figure out what makes you happy and DO IT! 4: Surround yourself with positive people and smile. You have one life, one journey. You're in charge! Sending positive thoughts your way.

there are regular PSA tests which generally measure PSA to .1 and anything less is reported as < .1

And < .1 is the goal post surgery

And there are ultrasensitive PSA tests (uPSA) which have lower levels of detection: Quest Labs limit of accurate sensitivity is < .02

Johns Hopkins is, or was, < .03

I have seen reports into the 3 digits, such as < .008

Honestly, not sure why there are different tests to such low levels. 🤔

I infer that allows a patient to follow any rise in PSA post treatment, even at extremely low levels.

If my PSA rose for example to .04 from < .02, I would "lose my mind", but I do not think that it would trigger any treatment; certainly would trigger closer monitoring.

One friend post surgery and post salvage treatment is being tested to < .1 level.

I believe that some MDs feel it reduces anxiety w/o impacting negatively on care and treatment to test to < .1

SE is shorthand for Side Effects (sorry)

What is uPSA? What is SE?

PSMA Pet scan didn't reveal distant spread. Thank you...

I had Salvage Treatment: 37 IMRT radiation txs over 8 weeks to whole pelvic floor and pelvic lymph nodes together with a 4 mos short term of ADT.

See SPPORT trial info.

This was shortly after my Prostatectomy. My PSA was "persistent"; 1st 90 day PSA .19 (did not return undetectable).

Referred immediately to Radiation Oncologist.

Bowel/bladder: 1st 4 wks no particular issues. 2d 4 weeks, increasing diarrhea and some pain/ stinging upon defacation. Resolved 2 - 3 wks after radiation completed.

Same experience for a salvage treatment friend.

Sexual function: I am not a good resource to respond; the ADT eliminated any libido and I was only a few months out from surgery and erectile function return was in its infancy.

On the happier side, my uPSA 1 year post salvage treatment has been undetectable at < .02 (limit of testing accuracy at Quest Labs).

Also, started ADT a month prior to radiation and that "no fun ride" made I difficult to distinguish between SEs from ADT and/or radiation.

Best wishes for a successful treatment.

Have they done a PSMA PET scan yet to determine where exactly the recurrence is? What (& where) were the SUVmax scores from the scan?

2 years of lupron. Been done for 3 years. Bad side effects. Still have bad hot flashes. 3 different meds and none work. Muscle loss and weight gain. But 5 years since radiation and still here and psa undectable. Good luck . HBO also caused problems. Have a great day

Sorry you have to go through salvage radiation, but it is likely necessary. Based on my experience (salvage radiation beginning 11 months after RP due to a PSA of 0.5), you may anticipate side effects to your bowel, bladder and sexual function. In my case, Imodium and high fiber helped with my bowels. Although I was told bowel problems would cease about a month after radiation they persisted for about 10 months. Increased urination especially at night which I attributed to ADT, resolved itself once the ADT left my system. Leakage still persists but is not a significant issue except in the bedroom. More on that later. Assuming you’ll be on some form of ADT, expect a low or nonexistent libido. That should improve a few months after the ADT ends. Urinary leakage during sexual arousal remains a problem for me. I have started using a condom for intercourse, and that helps insure I will not dribble in my partner. For me, the side effects of salvage radiation were much worse than advertised. However, given that I have been cancer free for more than a year now, salvage radiation was definitely worthwhile.

I forgot. Add 50 HBO treatments. Good luck.