Salvage radiation aftermath
Can anyone share their experience with salvage radiation/ADT after what was told to me as a very successful DaVinci surgery? I’m a 71 year old.
My RP was three years ago after a Gleason 9 tumor was discovered high on the back wall of my prostate. Prostate removal and lymph node removal showed no spread outside the prostate, however, at my 1 year anniversary my PSA was no longer undetectable, it was .37. The PCMA/ PET scan couldn’t locate any cancer, so I was given Lupron, started my 33 radiation treatments, received a second shot of “testosterone crusher”, and ended my treatments. I’ve had a hard time. Had two partial bowel blockages early on requiring hospitalization, lost 40 pounds, have had horrible hot flashes, loss of most of my continence, lots of fatigue and sleep issues.
At this juncture, three years past RP and 1-1/2 year since the radiation and ADT, I’m clinging to the hope that my cancer won’t return and my testosterone will climb back into the normal range. What are my chances of getting a little more normal? My six month PSA/ testosterone labs are tomorrow. I’ll let everyone know what the results are.
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This would be a case where a decipher test would’ve been useful to tell you your chance of reoccurrence after surgery.
If you want to post the biopsy result of your prostate after it was removed that could give us some idea about what the possibilities are, Having No spread outside the prostate may not be enough reassurance. What did the biopsy show, Were there things in it that imply that you are going to have reoccurrences things like extra capillary extensions, intraductal, Cribriform or seminal vesicle invasion. Was anything else found in the prostate?
All those things can lead to reoccurrence, even though it has not gone outside the prostate.
The fact that your PSA came back so quickly after surgery implies that you have a higher chance of recurrence. After my prostatectomy, it was 3 1/2 years before my PSA started rising, I had salvage radiation and 2 1/2 years later my PSA started rising again, At that point, I was put on Lupron (ADT). I’ve been on ADT since, almost 9 years, because I have a genetic error BRCA2, which causes my cancer to keep coming back.
Have you had genetic testing? That could be why your cancer keeps coming back. If there was cancer in your family like Breast cancer, Pancreatic cancer or other family members with prostate cancer that could be a factor.
If you need to get a genetic test That can affect how you will be treated. If you went to an oncologist, they almost definitely would’ve had you get one before doing radiation. You can get one free here, results come back in about three weeks and a geneticist will talk to you about the results.
Prostatecancerpromise.org
Make sure you do not select the option to have your doctor involved. Otherwise they will not send you the kit until your doctor has been contacted.
Wish you the best.
Hi @makemyday1
Sounds like we're pretty close in treatment profiles. I don't know how long you were on ADT, I was on for two years and now am one full year off of it. My numbers look like this:
Date PSA Total T Free T
6/3/24 < 0.006 3 0.8
11/09/24 < 0.006 82 2
02/28/25 < 0.006 192 3.5
08/28/25 < 0.006 182 5.1
Obviously I tested a lot more than that but these are the only ones with testosterone included. It's not normal but it's a lot better than where we started. Hot flashes reduced to one or so per night and not anywhere near as intense as they were.
Thanks so much @jeffmarc. You’ve given me a lot to think about, and some actionable items as well.
I’ll post biopsy results after I get my PSA/testosterone results tomorrow.
@web265 ,
I’ve had a similar climb in testosterone, from 50 in September 2024 to 179 in March 2025, both with a PSA of < 0.01. Today I had my third test (finished radiation treatments in April 2024 and received last injection (Eligard) in March 2024.
Just from my current symptoms from the effects of ADT, I don’t think I’ll test normal for testosterone this time either. I’ll post my results tomorrow when I get them.
@jeffmarc and @web265 - the results of my 1-1/2 labs were encouraging.
My PSA number is still undetectable, and testosterone has finally climbed into the normal range. It’s taken 1 year for testosterone to go from < 13 to 313.
Some breathing room, for now, and I meet with my radiation oncologist on the 6th.
Wow, I'm sorry to hear about all you've been through!
But I'm also a little confused. The ADT makes perfect sense, but how do they do radiation therapy if they have no idea where the cancer is active, and where to focus it?
Hello @sandguy -
As it was explained to me, the absence of any fluorescence shown by the PET-CT scan meant that the reason I showed chemical recurrence was that only a tiny bit of leftover cancer, not enough to show up, in the bed of the prostate was to blame. I agree, this was puzzling that they’d perform radiation on my pelvic region without proof that anything was there, but evidently my radiation oncologist was right to target the bed of the prostate and remaining lymph nodes because now I’m still knocked back to an undetectable PSA and my testosterone has regained some normalcy.
@sandguy
Salvage radiation is done to the prostate bed. They are unable to find anything in the vast majority of cases, If they did find something they would use SBRT to zap it. The most likely spot for cancer growth is the prostate bed and the lymph nodes in that area.
When I had my PSA dropped to undetectable for 2 1/2 years so it was the right spot.
Is everyone here posting from the USA? If so where r u from? Where do you think has the best treatment for stage 4 prostate cancer. I’m in Boston and was doing great went from a 326 PSA down to 0.6. But now I’m feeling pains in my stomach and my chest and my shoulder blade on right side. I’m scheduled for a biopsy next week. They found a mass between my 4th and 4th rib.
And 5th rib. I’m on lupron and erleada.