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About to start treatment with Proton, question about ADT
I am a 55yr old, PSA was 7 in June 2024, sent to Urologist who immediately scheduled an MRI, followed by biopsy. He also did a Decipher without telling me, and it was not covered by insurance. They waived the charge, and my score was 0.18, so low. I was Gleason 6, so we did active surveillance until I had another PSA of 10.39 in April 2025. Urologist did another in June 2025, 11.65, so still rising. Sept 2025 MRI showed Gleason 7 (3+4) so time to do something.
I was referred to OU Stephenson Cancer Ctr and they wanted yet another MRI because he could not effectively visualize the single lesion to determine if he could get to it with ablative therapy. Ultimately he told me that surgery or radiation would be best. I met with the radiology team and they are going to do 5 rounds of Proton instead of more rounds of standard radiation (great!) and they asked me about entering a study on efficacy of Decipher. I have a 50/50 chance of getting ADT to determine whether the Decipher can be justified for situations like mine for possibly changing SOC to not have ADT.
In preparation for radiation, I have now had a PSMA PET scan, and it was clean. They couldn't even get a strong result from the primary site, which I was told was not unexpected. My PSA was 10.02. Next steps are CT Scan and then placement of markers.
My urologist said that if I am relatively low Testosterone, with a Decipher of 0.18, he would decline ADT. The Urology Oncologist disagreed and said that SOC is ADT with radiation. He is fine with the possibility of not having it for the study. My wife is adamant that I should not get ADT because the side effects are worse than those from radiation.
So I have a dilemma. One one hand, the safest choice is ADT. So if I draw that, it raises my chances of staying cancer free. If I draw no-ADT, I have fewer side effects. I can opt out of the study at any time, even after I know which path, no harm no foul, but I am technically out of the study- although they will still track my results.
So, thoughts? Has anyone had the fewer rounds of higher strength Proton, did you do ADT or not? Am I a bad person if I get the ADT path and then bail? (The study is paying for a 2nd Decipher) How bad is Proton going to suck? I actually feel pretty good about all of it. Everyone is optimistic that I caught it early, it is localized, and I have very good chances of a positive outcome.
Thanks!
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Well...update. I'm no longer eligible for the GU10 study because my newest Decipher came back 0.52, and it required less than 0.4. While this is good, because I was fairly certain that had I drawn the arm with ADT I would have withdrawn, now I am wondering if I *should* do the ADT. I know my oncologist is pushing for it, but the side effects worry me more than the treatment itself.
Sorry to hear.. Sounds like a lot of confusion to work through.
I had psa 98 gleason 8. did 28 proton therapy and 2 years hormone and chem drugs.
A long road of fatigue. I wish I'd only done 1 year.
A book to help on what questions to ask.. You can beat prostate cancer (Marchini) might be helpful
@mcan56 At 55y, if you’re able to engage in resistance-training exercises, you’ll tolerate ADT well.
There has been much reported on the physical benefits of exercise while on ADT. Here are just a few that I’ve bookmarked:
> Drs. Scholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch
> A paper on The Benefits of Exercise During Hormone Therapy: https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+2015_PCRI.pdf
> A study about the benefits of exercise to counteract the adverse effects of ADT: (They also describe a good resistance-training program): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx
If you do what it takes, you’ll do very well with the hormone therapy - it’ll just be an annoyance; if you don’t do anything, hormone therapy can be your worst nightmare.
For me (a gym rat), ADT was a walk in a park.
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1 Reaction@mcan56 I am 65 and started this whole adventure with a PSA of 5.5 and Gleason 7 (3+4), but due to some other factors was diagnosed unfavorable intermediate. I decided on a 28 treatment proton therapy and my RO and MO recommended 6 months ADT, specifically Orgovyx. I was very hesitant to do the ADT as I was also very worried about the side effects, but after a lot of research and reading I decided I could live with 6 months if it increased the chance of a positive outcome. I had read about the positive benefits of exercise and since I have been running and lifting for years I just continued my workout schedule. I don't know if it was the working out, my genetics or chance (maybe all three), but I had almost no side effects from the Orgovyx. I did have loss of libido, and a few warm flashes, but that was about it. My testosterone went from 6 to 116 one month after stopping the ADT. I have my next blood test next week, 4 months post treatment, and I'm interested to see what it is.
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2 ReactionsSo after my visit, and expressing my concerns about ADT with my existing Diabetes, he was very much ok with skipping ADT. Next step is the marker placement Dec 12 and then the CT scan and what I am referring to as the "butt mold" 🙂 and like Proton therapy in early January.
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