Long-term radiation side effects post surgery: Any experiences or data

Hey @cedard, allow me to tag a few members to kick-start this discussion like @big220al @web265 @kujhawk1978 @jeanadair123 @john57 @stoney @perrychristopher @hammer101 @northoftheborder who I *think* had radiation after radical prostatectomy. I don't know who is 10 years out, however. (I adjusted the title a wee bit too.)

Dave, when were your treatments or what was your timeline? Are you experience long-term or late side effects?

My RALP was two years ago. No radiation after.

Thanks Colleen. Appreciate the tags. I'm 55. Had a RALP 5 years ago July 2019 - (Age 50). Officially hit .2 (1) year ago and am maintaining at a .2 (Have had (4) PSA tests in last year). My case is officially labeled a BCR.

1st Urologist says at my age he would wait to PSA hits .4 or higher to do radiation, because of late term side effects not kicking in until 10-15 years after radiation. My decipher score recently came in at High Risk (.87) even though I have a very low doubling time. Had extracapsular extension at time of surgery as well. (2) Local Radiation oncologists want to radiate pelvic lymph nodes, prostate bed, and put me on hormone therapy for 6 months.

Since I'm maintaining at a .2, I'm trying to decide if it's worth the risk of long-term side effects of radiation based on other people's experience. Specifically, I'm considering proton radiation but looking for either proton or photon experiences from others that are at a minimum of 10 yrs. out. Thanks - Dave

Hi. I didn't have a prostatecomy, just the radiation. My side effects emerged about a year after the 60 gy of SBRT radiation to my prostate: the most-bothersome one was damage to the bottom of my bladder where it touches the prostate. It hasn't gone away (2 years after radiation), but it's under control now, and I'm gradually titrating off the bladder-urgency meds — with the urologist's blessing — to cut down on the number of prescription drugs I'm taking.

At this point, there's a good chance that the (relatively minor) radiation cystitis and radiation proctitis are permanent, but I can live with them, especially since the alternative for me might have been not living.

Hey @cedard
I want to chime in since I was tagged. My operation was fairly recent, 09/02/21, I BCR'd and went through 39 radiation treatments, those just ended in August of 22, stopped my Orgovyx June 1 of this year. I don't really qualify to answer this yet. As of now, things are pretty much fine, different for sure, but okay. PSA has been steady at < 0.006, next PSA test will be the first since off the ADT meds. (knocks wood)
Ping me in about 8 years!!

Dave

I can't answer your question - looking for either proton or photon experiences from others that are at a minimum of 10 yrs. out...I have had three go rounds of radiation:

March 2016 SRT 39 IMRT 70.2 GYa to the prostate bed.
July 2017 WPLN 25 IMRT 45 GYa
April 2023 SBRT 5 x 8Gya

"1st Urologist says at my age he would wait to PSA hits .4 or higher to do radiation, because of late term side effects not kicking in until 10-15 years after radiation.." I am not at that point, just over eight years since my SRT but so far, zero side effects from my three separate radiation treatments. Why, who knows, I have an excellent radiologist, the same one over these 8 years, she has a highly skilled radiology team. I've seen the 3D planning software and my wife has been in the "star wars" control room seeing how they image my organs in real time and adjust the delivery accordingly. Then again, as I say, statistics, Bell Curve. There are other members on this and other forums who have experienced side effects . As to waiting until PSA hits .4 or higher, well, not sure about that as the general rule of thumb is the lower the PSA, the greater the likelihood of a successful SRT to the prostate bed. So, if your decision is SRT to the prostate bed only, it may be better to pull the trigger on treatment now vice waiting...

"Local Radiation oncologists want to radiate pelvic lymph nodes, prostate bed, and put me on hormone therapy for 6 months..." Given the clinical data you present - Decipher and ECE, this may be a reasonable approach as it may indicate your PCa has already spread to the PLNs. When I did SRT in 2016, I had several high risk factors - time to BCR, GS and Grade Group. There was data coming out of clinical trials as well as Mayo that with those high risk factors, statistically my BCR had spread to the PLNs. Imaging being what it was then, no way of determining that. Even today at .3, around 1/3 probability of imaging locating that recurrence. I discussed with my urologist and oncologist whether we should include the WPLN and six months ADT. They argued there was not long term data to support that and said the SOC was SRT to the prostate bed...epic failure, I was right, wished I wasn't. I did learn a valuable lesson, stand your ground, shared decision making, I have the 51% majority...

There are other pieces of the clinical data which can aid in your decision making. The pathology report has them - GS, Grade Group, SV, margins, percent of involvement in the prostate...

Another possibility in your decision making if you decide not to do SRT to the prostate bed only is to do nothing now, continue to monitor your PSA, when it gets to .5-1.0, image with one of the PSMA PET scans as you double your chances of locating the recurrence which informs your decision and provides your radiologist the data to build a better treatment plan. That's been my decision criteria, three or more consecutive increases in PSA, image when between .5-1, then decide. I don't see it as changing the outcome in terms of my PCa running wild and getting out of control.

Given your age and if otherwise your health is fine, life expectancy potentially 15-20 years, you have choices depending on your goals and priorities in balancing quantity and quality of life. Gather your data, weigh the high risk factors, discuss with your medical team, make your decision.

Kevin

May be worth a read - https://www.urotoday.com/conference-highlights/apccc-2024/151512-apccc-2024-synchronous-low-volume-mhspc-in-which-patients-do-you-recommend-combination-systemic-therapy-plus-local-treatment-of-the-primary-and-in-which-patients-is-adt-alone-plus-radiotherapy-enough.html