Salvage radiation aftermath

Posted by makemyday1 @makemyday1, 20 hours ago

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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jeff Marchi | @jeffmarc | 18 hours ago

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.

web265 | @web265 | 6 hours ago

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.

makemyday1 | @makemyday1 | 5 hours ago

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.