What's Next After SBRT and ADT?

Posted by middletown @middletown, 3 days ago

Gleason 4+3. 5x SBRT end of November 2025. Started Orgovyx November 1st of 2025. I just came off 6-months of Orgovyz on May 1st. PSA is now undetectable. 65-years old.

My question is what's next? Seems like the more I read the more the reoccurrence probability goes up. I know monitoring is critical but what's the game plan to PREVENT reoccurrence? My docs and the rest of the healthcare world are not into preventing, only treating. I don't want to sound negative. I am incredibly fortunate on many fronts and doing great. I am continuing rigorous strength training and improving diet. What else is everyone doing to PREVENT reoccurrence.

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

Profile picture for pesquallie @pesquallie

@climateguy

Exercise has always been important to me, but my side effects have been so painful to my bones, joints, and muscles that I have had to significantly reduce how hard I exercise. For instance, my 45-minute treadmill workout had to be reduced from 4 mph at 10% slope to 3.2 mph at 10% slope. My muscle pain level was so high that I felt that my legs had been beaten with a baseball bat.

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@pesquallie If you are talking about the side effects of ADT:

In my case, at times, I've experienced joint pain and muscle pain so severe there were some exercises and stretches I could not continue to perform. My medical oncologist, the guy who is supervising my ADT (Orgovyx) for me was certain that the ADT had nothing to do with it. I wonder about that.

At one point, my hip and the front of my right thigh were the most consistently affected. A primary care doc thought the start of arthritis was responsible, and that stretches and specific exercises might lessen the rest of the symptoms. The thing is, the pains moved around. For a while it was the hip that was the worst. Then it was the thigh. Then it was the left knee. Then I had extremely severe mid back pain for one night.

Muscle and joint pain is listed on the Sumitomo/Pfizer Orgovyx webpage as one of the most common side effects of Orgovyx.

I kept on exercising. If the pain was so severe in enough places, I would skip a day, but that was rare. If I couldn't maintain a certain position or exercise a certain muscle, I would move on to a different position or exercise some other muscle. Some of the stretches and exercises prescribed by my primary care doc seemed beneficial, others caused pain so I didn't do those. Things got gradually better over a month or two.

Maybe things would have continued to slowly, in fits and starts, resolve over time, but what caused the diminished symptoms to almost completely disappear was when I started in exercising muscle groups in a more controlled and vigorous way using pin loaded machines in the local YMCA. The resistance training I was doing at home was nowhere near as controlled or consistently vigorous as the resistance training I discovered how to do at the gym.

I don't have pains in muscles or joints now that stop me from doing anything, or that cause me to complain, not sleep, or take days off.

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Profile picture for climateguy @climateguy

@pesquallie If you are talking about the side effects of ADT:

In my case, at times, I've experienced joint pain and muscle pain so severe there were some exercises and stretches I could not continue to perform. My medical oncologist, the guy who is supervising my ADT (Orgovyx) for me was certain that the ADT had nothing to do with it. I wonder about that.

At one point, my hip and the front of my right thigh were the most consistently affected. A primary care doc thought the start of arthritis was responsible, and that stretches and specific exercises might lessen the rest of the symptoms. The thing is, the pains moved around. For a while it was the hip that was the worst. Then it was the thigh. Then it was the left knee. Then I had extremely severe mid back pain for one night.

Muscle and joint pain is listed on the Sumitomo/Pfizer Orgovyx webpage as one of the most common side effects of Orgovyx.

I kept on exercising. If the pain was so severe in enough places, I would skip a day, but that was rare. If I couldn't maintain a certain position or exercise a certain muscle, I would move on to a different position or exercise some other muscle. Some of the stretches and exercises prescribed by my primary care doc seemed beneficial, others caused pain so I didn't do those. Things got gradually better over a month or two.

Maybe things would have continued to slowly, in fits and starts, resolve over time, but what caused the diminished symptoms to almost completely disappear was when I started in exercising muscle groups in a more controlled and vigorous way using pin loaded machines in the local YMCA. The resistance training I was doing at home was nowhere near as controlled or consistently vigorous as the resistance training I discovered how to do at the gym.

I don't have pains in muscles or joints now that stop me from doing anything, or that cause me to complain, not sleep, or take days off.

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@climateguy

My pain was in all muscles including my hands, feet, arms, shoulders, and legs and it was 24 hours a day. My exercise did not cause the pain, but it made exercise painful. I am 83 years old but have been working out very hard since my open-heart surgery 19 years ago. My cardiologist also saw an impact on my heart (enlarged on the right side) that began to improve after stopping Lupron. There is no doubt in my mind that the Lupron caused my problems that are now getting better after 11- months without Lupron.

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When I started on ADT in 2021 at age 56, I did experience a lot of pain, but it was primarily around recovering from the spinal compression caused by the metastasis and scarring from the spinal surgery.

I'm still on ADT now in 2026 and experience those pains much less often. I have to do 30 minutes of physiotherapy stretches every morning, and while they're primarily to preserve my mobility, they may have the accidental side effect of also mitigating any stiffness and soreness that comes from the ADT. 🤷 So perhaps a physiotherapist could help.

As for exercise, weight-bearing exercise like walking on an incline treadmill might no longer be the best idea, especially if ADT is exacerbating existing arthritis (which you might not have noticed as much otherwise).

When I was first recovering, my physiotherapist suggested going somewhere that had treadmills underwater in a swimming pool, so that the water would bear a lot of my weight. I never tried that, but it's interesting to know that stuff like that exists. Other options would be swimming, riding an exercise bike, or even using a rowing machine, maybe: just anything where your legs don't have to hold your body's full weight plus the extra impact of walking fast or running.

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Profile picture for jim18 @jim18

The problem with recurrence is most is out of our control. The two largest factors are genetics (Decipher test mentioned can give you some insight on your situation) and how through your treatment was (positive margins on surgery, misses on radiation, or undetected micro-metastasis that PSMA PET could not detect). Read the Active Surveillance - Systematic Review post for information on lifestyle actions (the poster also has a website that covers many supplements, etc.). Exercise and diet seem to have the most impact and you have those covered. From a medical standpoint more ADT will reduce if not eliminate prostate cancer recurrence, but studies have shown that the increase in all causes of death from the ADT side effects out weights any population benefit from decreased prostate cancer death. Unfortunately, there are more snake oil cures or preventions for cancer than just about any other disease. People like to be in control, even if it is an illusion. If one of these cures gives you a sense of comfort and control than go for it. Just keep the PSA testing current with everything else you do.

For your current situation your PSA is still being suppressed by ADT and may be until early August. It is not unusual for PSA to become detectable again once testosterone returns after radiation and ADT. PSA remaining under 0.25 is predictive of a low recurrence rate while > .50 has significantly more recurrences.

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@jim18

I especially liked your comment that "studies have shown that the increase in all causes of death from the ADT side effects out weights any population benefit from decreased prostate cancer death." Doctors seem to want these studies to remain a secret because ADT shots are about all they have to offer you once surgery or radiation are finished. My doctor even suggested Trimix even though I have zero libido which would prevent it from working adequately.

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At most every seminar I go to, I ask the question - “Is there any other marker - other than checking PSA every 6 months - that I should be monitoring.” The answer is always “No, PSA is currently the gold standard for monitoring post-treatment.”

(During April-May 2021, I had 28 sessions of proton radiation and 6 months of ADT. Now at 70y/o; PSA is 0.314.)

They say that deaths from cardiovascular disease are 10x that of prostate cancer, and that the leading cause of death for someone treated for prostate cancer is actually cardiovascular disease (not prostate cancer). So, I’m primarily watching out for my cardiovascular heath - exercise, diet, etc. They say that a heart-healthy diet is a prostate-healthy diet so, by keeping up with my cardiovascular health, I’m taking care of both.

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Profile picture for pesquallie @pesquallie

@jim18

I especially liked your comment that "studies have shown that the increase in all causes of death from the ADT side effects out weights any population benefit from decreased prostate cancer death." Doctors seem to want these studies to remain a secret because ADT shots are about all they have to offer you once surgery or radiation are finished. My doctor even suggested Trimix even though I have zero libido which would prevent it from working adequately.

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@pesquallie wrote ❝I especially liked your comment that "studies have shown that the increase in all causes of death from the ADT side effects out weights any population benefit from decreased prostate cancer death." Doctors seem to want these studies to remain a secret because ADT shots are about all they have to offer you once surgery or radiation are finished.❞

There's no secret — note that @jim18 wrote "_more_ ADT". Doctors base the length of ADT on just those studies. That's why they might recommend (e.g.) only 6 months ADT after surgery for for someone with early-stage prostate cancer and no extra risk factors, because that's a length of treatment where the studies still show overall significant survival benefits for a patient in that specific situation.

For people with high-risk but still localised cancer, studies have shown that "ADT holidays" are effective at improving overall survival: once PSA is down, pause ADT unless/until PSA rises back above a certain level. Again, this is standard of care, not a deeply-concealed secret the the oncology community doesn't want us to find out.

For advanced-stage with distant metastases, unfortunately, research so far shows that ADT holidays reduce overall survival, but there's new research to see if continuing ARSI (like a -lutamide) changes the equation (see the LIBERTAS trial currently underway, for example).

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Long answer, I'm at the gym, wasn't sure how to get a MS Wotd document from my Google Drive to my phone and then attach.

What's next...!,

We don't know...

What can we do to "prevent" recurrence?

Put me in the camp that says we don't cure advanced PCa, we manage it.

So, not sure "prevent" is the word you're looking for. Maybe, what can I do that can support a longer progression free survival (PFS) period?

The answer likely mirrors what we do to age well.

Diet
Exercise
Managing stress
Get the routine medical work done, physicals, vaccinations, colonoscopies, cardio vascular work ups..,
Stay active, by that I mean be social, do things whether it's travel, concerts, theater...

On exercise...

The association between increased cancer specific survival, amount and intensity of physical activity is well-established across a range of cancers including for men with cancer of the prostate.1 If patients with cancer are more physically active, then it is hardly surprising that their all-cause mortality will be reduced simply because regular physical activity reduces risk and slows progression of all chronic diseases in particular of the cardiovascular system.

What is less understood and requires urgent research focus is the relationship between physical activity and cancer specific mortality. In somewhat of a landmark study, Kenfield et al1 reported a 61% lower risk of prostate cancer death in men that did three or more hours per week of vigorous physical activity. This provided important new insight suggesting that it is not just any physical activity but that the intensity is a relevant factor in the survival benefit.

While the relationship between physical activity and cancer survival is well demonstrated by numerous retrospective studies with quite large numbers of patients, they do not prove causality. It could be that patients who are doing better live longer and they also happen to be more physically active. To address this gap in knowledge an international trial has been established with a randomized controlled design to specifically investigate whether targeted exercise medicine will extend survival in men with stage IV prostate cancer.

Incorporated into this research is an extensive examination of the underlying biological mechanisms by which exercise influences tumor biology. There have been a range of mechanisms proposed including:
Cytokine signaling.
Enhanced immune function.
Hormone receptor adaptation.
Reduced systemic inflammation and oxidative stress.
Changes in tumor vascularization.
Modulated gene and epigenetic expression.
Telomere alterations.
Modulation of other circulating factors such as insulin and growth factors.

From this trial, our team recently published a paper in which we reported that:

6 months of vigorous exercise elevated the concentration of myokines in the systemic circulation and the serum from these patients produced a 21% suppression of prostate cancer cell growth.

Myokines are cytokines produced by skeletal muscle cells and those that we investigated have been demonstrated to signal cancer cells to reduce growth rate and increase phagocytosis.

In addition to this direct signaling these myokines also work in tandem with the immune system to increase the surveillance and activity of cytotoxic T cells to identify and destroy both in situ and circulating cancer cells.

We have also established that there is a relationship between increase in muscle mass over a three-month exercise intervention and the concentration of myokines.

This is a highly important finding as maintaining or increasing muscle mass is further consolidated as an important goal in the management of prostate cancer. Such a hypothesis is supported by another of our publications in which we reported that overall survival in men with prostate cancer is associated with muscle mass.13
This new knowledge elucidates the significance of exercise medicine specificity and the importance of tailoring the exercise prescription to the individual patient.

It is becoming increasingly clear that exercise is not a single medicine and how it is dosed in terms of volume, intensity, timing, duration, and periodization has impact on cancer specific outcomes.

Last year my gym said I worked out there 272 times. I went skiing with friends in Colorado, took vacations that often involved hiking in the mountains, I rode my bike often...

Has my lifestyle been a factor in the length of my breaks from systemic therapy - five years after triplet and going on two plus after doublet? Maybe, but it's anecdotal evidence, study of one.

My medical team thinks so...

My intuition says possibly!

Kevin

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Profile picture for northoftheborder @northoftheborder

@pesquallie wrote ❝I especially liked your comment that "studies have shown that the increase in all causes of death from the ADT side effects out weights any population benefit from decreased prostate cancer death." Doctors seem to want these studies to remain a secret because ADT shots are about all they have to offer you once surgery or radiation are finished.❞

There's no secret — note that @jim18 wrote "_more_ ADT". Doctors base the length of ADT on just those studies. That's why they might recommend (e.g.) only 6 months ADT after surgery for for someone with early-stage prostate cancer and no extra risk factors, because that's a length of treatment where the studies still show overall significant survival benefits for a patient in that specific situation.

For people with high-risk but still localised cancer, studies have shown that "ADT holidays" are effective at improving overall survival: once PSA is down, pause ADT unless/until PSA rises back above a certain level. Again, this is standard of care, not a deeply-concealed secret the the oncology community doesn't want us to find out.

For advanced-stage with distant metastases, unfortunately, research so far shows that ADT holidays reduce overall survival, but there's new research to see if continuing ARSI (like a -lutamide) changes the equation (see the LIBERTAS trial currently underway, for example).

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@northoftheborder Yes, lutamides (while having SE’s of their own) seem to have much less of an impact on the body as a whole, when compared to ADT.
Phil

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