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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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@frankybaby
There are a lot of Canadians here. They don’t have a wide range of treatment options as we do in the USA.
There are even people from other countries.
@chippydoo, very positive! Thank you. I had a biopsy done in Dec 2021 when this whole thing started. Was told I had “tiny cancer”, Gleason 3, and it wouldn’t be a problem to just monitor a few things. Got Dr Walsh’s book on Surviving Prostate Cancer which probably saved my life, and began my PC education. Decided a 2nd opinion was warranted and picked an up and coming prostate cancer research center in Virginia where I live. To make a long story short, my next biopsy six months later was targeted to an MRI overlay to pull samples from a very hot tumor they found high and on the backside. That was July 2022. A week later my Urology Oncologist called with the bad news, and some good news. Gleason 9, probably contained. Surgery ensued, cancer undetectable for one year, then faced with salvage radiation. I thank God I didn’t listen to my first urologist, otherwise, I’d not be writing this in all likelihood. My surgical biopsy showed containment of my cancer at Stage 3, 75% Gleason 4 and 25% Gleason 5, 11% of the prostate. I’m lucky, I have good people watching over me, and taking all this for granted won’t work for me. So thanks for your thoughts and best wishes, and just hang in there. It gets better!
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2 ReactionsThanks @jeffmarc for sharing your experience in some detail. I am much more reassured now than I was when I posted about my concerns about the side effects of the treatments for recurring prostate cancer,
@makemyday1 Up and coming in Va? We have even more in common as I am near Richmond which warrants me asking you which center is the up and comer in Va? UVa or VCU or another. I was seen at Va Ur and my second at VCU. I would welcome the info in case of future BCR. Diagnosed in Oct 2022, Gleason 9 grade 5, 10% one pin dreaded Cribriform T2 contained. Alleged margin BCR, 3 month Lupron switching to Orgovyx for the second 3 months with 25 sessions salvage this year. Did I say I was really interested in that research center lol. Thank you for your kind words.
@chippydoo, yeah, Emily Couric Cancer Center, UVA. I think I made a good choice. The reason I say up and coming was because they were upgraded to a NCI Comprehensive Cancer Center at about the time I was narrowing my choices. VCU’s Massey also has that distinction. For me, it made sense, and I love Charlottesville from our time in a little AirBnB during my 33 radiation treatments. My Urology Oncologist surgeon was trained on DaVinci at Johns Hopkins before coming to UVA Health. I asked all the questions about experience with the DaVinci and felt very comfortable. I could have chosen Georgetown, or VCU, or Hopkins. We live in Fredericksburg.
@chippydoo, and one more thing. My doctor specializes in nerve sparing techniques with the DaVinci which I was grateful for. The Radiation Oncology department has been with me the whole time, even before my prostatectomy. They helped me make up my mind which direction to go, radiation or removal, and the handoff was flawless once I was diagnosed with chemical recurrence. The same doctor who helped me weigh the pros and cons is with me today. In fact, I see him in about 3 hours to go over my last labs.
@frankybaby I have niece who is a researcher at Dana Farber. I can ask her, but, if it’s not too far for you to go, Dartmouth Hitchcock in Hanover NH might be worth a look. Lean towards a teaching hospital. They’ve got the latest and greatest.