Salvage radiation therapy after radical prostatectomy

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.

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...

uPSA = ultrasensitive prostate-specific antigen (assay or test), the two most common are probably the one used by Labcorp (minimum sensitivity .006) and the one used by Quest diagnostics (minimum sensitivity .02).
SE= side effect

Well, as others have said, those who have not experienced side effects from SRT, may not post on this or other forums.

I did SRT after a very successful surgery in March 2014, PSA was undetectable using standard PSA to a single decimal point until 15 months out (roughly September 2015) when it came back as .2, then 90 days later, was .3.

At the time, data was emerging from clinical trials as well as Mayo that in high risk PCA with BCR, there was often spread outside of the prostate bed to the PLNs and recommended treatment was SRT to the prostate bed, extend to the WPLN and include short term (six months) ADT.

I brought this data to my medical team who dismissed it saying there was no long term data to support it and the SOC was SRT to the prostate bed only.

Ninety days after completing the 39 IMRT, 70.2 GYa to the prostate bed only, epic failure.

So, understand your decision as it is from your radiologist, it is the "SOC" though as I have said before on this forum, are population based and historical, question, do you have an oncologist on your medical team, if so, what did that individual say, if not, consider consulting one.

The NCCN Guidelines, #13 for PSA persistence or recurrence after surgery suggest that if no other signs of cancer, radiation with or without hormone therapy or monitoring (see, choices, no definitive answer...!). So, your PSMA tests says "no cancer sign of cancer...yet, we intuitively know there is, otherwise your PSA would not be rising. At that PSA, low probability, rough 1/3, of finding any recurrence. There may be other data to aid in your decision making, the pathology report from your surgery which would indicate GS, GG, PSA tests which would give your PSADT and PSAV...

Question is, how aggressive do you want to be? In part, that depends on how aggressive your PCa is. The fact that it has returned may answer that question. As I said, so will your pathology report and PSA tests over time.

But, to answer your question since I haven't yet. I did not experience any SEs from my SRT. Why, who knows. I'm going to go with a highly skilled radiologist and her team.

Kevin

My MO at Johns Hopkins uses regular PSA test (Labcorp undetectable is < 0.1). When I asked him why he didn't use the ultra sensitive test he said, 1) the ultra sensitive tends not to be accurate a low numbers and the results can fluctuate, 2) the PSA would have to rise above 0.1 before it would trigger possible additional testing i.e. another PSMA PET. Makes sense to me. I've had enough anxiety without watching an ultra sensitive test yoyo and not do anything about it.

Thanks Kevin for detailed response and information. Sorry that there was failure with Pelvic Bed SRT. Did you get ADT after that? Hope you are doing better now. Again appreciate your detailed response...

The failure of SRT combined with the PSADT and PSAV led me to do triplet therapy staring in Jan 17.

Best wishes...Looks like you are getting good treatment and will get it under control.

I am a 65 year old male who had a radical robotic prostatectomy in the fall of 2017, did the radiation in early 2018.
Everything was good for about 18 months, then I started to pass blood, then started passing “pieces” of bladder.
Had to go to the ER and Dr’s office numerous times. They showed me how to “self-cath” so I did this for the next 3 years, it got to where I was cathing more than 30 times a week.
Having to self-cath at work became a problem with all the UTI’s. (Warehouse environment)
I took early retirement in late 2021 because of the stress increase due to a change of management.
I had a Supra Pubic Catheter installed in June of 2022, this did get my bladder to quit “peeling” but the spasms were horrendous. Took it out in March of this year after the doc said my bladder was “the best he has seen it look.”
No stones or cotton candy, (his words not mine) .
I have had to self-cath a few times since.
The scar tissue and neck constriction is my problem.
The bottom line is my doc says the only thing he can do to give me at least some improvement in my quality of life is to do a cystectomy with an ileal conduit.
Doc says the radiation did too much damage to do anything else.
I’m looking for ideas. Not real fond of wearing the bag full time.

Adding to this is a MRI in 2020 that lit up a few spots on my hip area around the prostate bed.
Tried taking chemo pills but my breast became so sensitive that I couldn’t wear a shirt.
Ended up getting an orchiectomy which took away my testosterone, thus eliminated the threat of the cancer spreading, but it opened up a whole new can of worms.