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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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When I was 65, 13 years ago, I had to have 8 weeks of salvage radiation. They gave me a six month Lupron shot And I didn’t realize that it had side effects and I didn’t notice any.
My brother at 75 had 5 sessions of SBRT radiation And a six month Lupron shot And he did have hot flashes that lasted for about nine months after the Lupron shot had expired. He noticed no other side effects.
If you are going to have ADT you should request Orgovyx Instead of an injection. Orgovyx has fewer side effects and after you stop taking it, your testosterone comes back quicker. While I had really major hot flashes on Lupron, I get very mild ones on Orgovyx, and I get very few.
I have been on ADT for eight years. A lead a normal life And no one has any idea I have prostate cancer unless I tell them. I do run on the track twice a day, 1 mile each time, and go to the gym three times a week. The first four years I was on ADT I didn’t do any extra exercises. My lifestyle kept me strong.
ADT can shrink the metastasis and make the radiation more effective. It will also stop it from growing since you usually get it a couple of months before you actually have radiation.
You have a very treatable case of prostate cancer. Don’t get too worried, between the treatment you plan on having and what is available if it comes back, you’re going to be around for decades.
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1 ReactionI don't keep up on the stats like @jeffmarc does, but, my RO said there was a 3%-5% chance of a better outcome with ADT vs without. That was in 2021 and things change quickly in the treatment of PC.
I'm a hit it with everything we can type of guy, I went on ADT for two years, it's a pain for sure, but doable.
off to the gym, Best of luck to you!
A lengthy response (that addresses all of your questions/comments) —>
Somewhat similar to your situation, I was diagnosed at 56y/o with low-grade, localized disease and was on active surveillance for about 9 years before my Gleason 6 became a Gleason 7(3+4).
During the last few of those 9 years, I obtained referrals to specialists in the various treatments and evaluated each treatment regimen to determine what was best for me, so that when/if the time came that I needed to make a treatment decision, I was fully informed and prepared to pull the trigger.
Regarding your recent MRI:
> Did the MRI report mention the terms extracapsular extension, seminal vesicle invasion, or perineural invasion?
> Did you get a 2nd opinion on the MRI scan?
Regarding your recent biopsy:
> What % were “4” and what % were “3”?
> Did the biopsy report mention the terms cribriform pattern or intraductal carcinoma?
> Did you get a 2nd opinion on the biopsy tissues?
You mentioned that “…. 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.”
> what were the SUVmax scores mentioned in the PSMA PET scan report?
Regarding the proposed 5 rounds of proton (that’s called Proton SBRT) - In this 2023 Mid-Year Prostate Cancer Patient Conference, Dr. Rossi mentions Proton SBRT with some caveats: https://www.youtube.com/live/WTqPnSRYtW4
—> Starting at timestamp 4:30:45: Proton SBRT
Similarly, I was offered the opportunity to be part of a clinical trial; I opted out of that opportunity, my attention being singularly focused in treating my disease. I did however chose to have my proton radiation treatment results submitted into a registry (https://clinicaltrials.gov/study/NCT02040467). Hopefully, it will help someone make a decision one day.
As for the use of ADT, NCCN guidelines do not recommend ADT for a 3+4=7 (see attached NCCN guidelines) unless there are other risk factors.
Most side-effects of ADT are easily minimized/avoided with resistance-training exercise. Here are just a few that I’ve bookmarked:
> Drs. Scholz and Moyad talking about exercise and hormone therapy (at a virtual PCRI conference): 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 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 side-effects - it’ll just be an annoyance; if you don’t do anything, hormone therapy can be your worst nightmare (like your wife indicated). For me, it was a walk in a park.
If it were me and I had any other risks beyond just a vanilla Grade Group 2, I would bump that treatment up a notch and take the 6 months of ADT (just out of caution).
As for my 28 sessions of proton radiation, it was a piece of cake. My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. And the short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.
As for the hormone therapy side-effects, they were greatly minimized by following a rigorous resistance-training program.
You have many good options available to you. Let the data guide your decisions.
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1 Reaction@web265 I am on orgovyx 6 months in of 24, not really experiencing any side effects I’m also taking zytega for the duration as well not any side effects either. Stay strong and best wishes for a successful outcome.
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1 Reaction@mcan56, how are you doing? What did you decide?
Diagnosed Gleason 7(4+3) in Sept ‘23, treated with 5 Proton blasts with ADT, Firmagon (2) and Eligard(1). I really didn’t have issues with the radiation. I felt a little sensation after the first treatment but nothing major. Now with the ADT, another story. To date I am still dealing with side effects. Namely my testosterone is not returning to normal levels, which I found out is common, if I remember right us about one third of treatment subjects. What about Spaceor gel? I have also experienced some bone density loss and some other effects. Whether to have ADT is a decision that you will have to make and the side effects are serious. Research the effects and look through the correspondence on here for the related effects. To date, I am doing very well and at the last PSA check, my surgeon (he’s the one who ruled out surgery for me, but administered the shots), told me I had the lowest PSA of all the patients in the practice. Sort of a plus but do your research because there is definitely more infornation out there now than when I went thru it. I am interested in the use of estrogen patches, same effect, cheaper, safer and less side effects. No matter what you choose, your life has been changed and welcome to the club.
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1 Reaction@slick64
If you go over to ancan.org You can search for videos on patch trial. Richard Wassersug Has done two videos that you can watch to see how well it works. I know a few people using it instead of ADT and it works quite well for them. Some of them have been on it for many years. It is just as effective as ADT, but has fewer side effects. It’s easier on your heart, your bones and you get fewer hot flashes. It can cause breast enlargement, You could get your chest radiated to prevent that. It doesn’t happen in every case.
If you have BRCA2, you do not want to do it. He discusses that.
About 10% of people that have prostate cancer don’t produce much PSA. It can be a little confusing when it comes to testing for future issues.
If you had six months or less of ADT testosterone usually rises pretty good after 9 to 12 months.
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2 Reactions@brianjarvis Thanks so much for your detailed response!
>Did the MRI report mention the terms extracapsular extension, seminal vesicle invasion, or perineural invasion?
> Did you get a 2nd opinion on the MRI scan?
"No evidence of extra-prostatic disease or pelvic lymphadenopathy" and no, no 2nd opinion.
> What % were “4” and what % were “3”?
> Did the biopsy report mention the terms cribriform pattern or intraductal carcinoma?
> Did you get a 2nd opinion on the biopsy tissues?
1 sample was Gleason 6 in 1 of 1 core, 13%, 1 was Gleason 7 in 1 of 1 core, 67%. The 4 was 20% cribiform. No 2nd opinion.
> what were the SUVmax scores mentioned in the PSMA PET scan report?
SUV of 3.7
> As for the use of ADT, NCCN guidelines do not recommend ADT for a 3+4=7 (see attached NCCN guidelines) unless there are other risk factors.
That's big. I'm really leaning toward dropping out of the study if I draw ADT.
Regardless, I definitely should start exercising- I am very sedentary currently, so any exercise would be beneficial.
@colleenyoung
Thanks for checking in- I went dark kind of thinking about it all. The more I read, the more I think I will reject ADT based on my current diagnosis.
I purchased and am reading "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer" (2023 version) and it says ADT is probably not necessary.
I talk to my oncologist tomorrow to discuss the PSMA PET scan and to schedule the marker placement and CT Scan used to dial in the radiation. I'm not sure if I will bring it up or not, I'm hoping that my study decision is made as well- they are waiting on the September core for a 2nd Decipher, which they should have by now.
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1 Reaction@mcan56 It’s the totality of your numbers and the (lack of) other risk factors that should determine your choice of treatments.
Your Gleason 7(3+4) only having 20% of “4” is good.
Regarding your SUVmax of 3.7 —> You need to know the PSMA SUVmax values of your blood, liver, and parotid (or lacrimal) glands, in order to compare the SUVmax scores of those cancerous areas to. Those should all be in the PSMA PET scan report. If they aren’t, ask the doctor for them.
If all you have is a low-grade 7(3+4), then ADT is not recommended for these favorable intermediate prostate cancers. In fact, there’s a 2023 study about this (https://youtu.be/cyY0nHXvzGc)
(With my 7(3+4), I was not planning on using ADT. However, prior to the start of my 28 proton radiation treatments a 2nd opinion upgraded the Gleason to 7(4+3). Not knowing which was “right” - the 3+4 or the 4+3 (since they were both educated, experienced opinions) - I chose to be treated using the higher Gleason score. So we simply added 6 months (two 3-month injections) of Eligard to my treatment regimen.)