Urologist said I could stop Orgovyx. Your thoughts?

Posted by johnny8924 @johnny8924, Mar 25 7:56pm

Age 73, in very good health. Diagnosed with Gleason 9, August 2024. Been taking Orgovyx since then, Not quite 20 months. Completed 28 sessions of IMRT April 2025. Latest lab results a few weeks ago: PSA < .04, testosterone < 1. My urologist said I could go off Orgovyx when my medication runs out in 15 days. I’m somewhat hesitant to do so because who knows how my PSA and testosterone levels will be affected. Thanks for any feedback, thoughts, etc.

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

I have to remind myself that a PSA reading of less than 0.04 cannot guarantee the absence of prostate cancer, and decisions about subsequent testing should be made in consultations with a person's healthcare providers.

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NCCN guidelines for Very High Risk (i.e., Gleason 9/10) prostate cancer with radiation is 24 months of ADT (+ ARPI).

If it were me, I’d stick with the NCCN guidelines. After that, I’d keep close tabs on PSA and testosterone as well as full CBC and CMP.

(At 65y with a Gleason 7(4+3), I had 28 fractions of proton radiation + 6 months of ADT. My PSA dropped to <0.008; testosterone went to 3.0. We checked PSA on the last day of treatment, then 6 weeks later, then every 3 months for 2 years, then every 4 months for 2 years, now we’re checking every 6 months for 2 years.)

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Profile picture for johnny8924 @johnny8924

I have to remind myself that a PSA reading of less than 0.04 cannot guarantee the absence of prostate cancer, and decisions about subsequent testing should be made in consultations with a person's healthcare providers.

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@johnny8924 There are rarely guarantees in life. With prostate cancer, you simply follow the numbers and let those guide you.

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Profile picture for brianjarvis @brianjarvis

@johnny8924 There are rarely guarantees in life. With prostate cancer, you simply follow the numbers and let those guide you.

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@brianjarvis

Absolutely, Brian! I'm a G9. Surgery 11/2024. Radiation and Eligard started 11/2025. PSA has been <.01 for the last year so I'm taking a break from Eligard. Doc is fine with it as both PSA scans came back negative so hopefully all cells that were left behind were in the bed. Fingers crossed!!! Good luck everyone!!!!

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Profile picture for dpayton @dpayton

@brianjarvis

Absolutely, Brian! I'm a G9. Surgery 11/2024. Radiation and Eligard started 11/2025. PSA has been <.01 for the last year so I'm taking a break from Eligard. Doc is fine with it as both PSA scans came back negative so hopefully all cells that were left behind were in the bed. Fingers crossed!!! Good luck everyone!!!!

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@dpayton If by “… as both PSA scans came back negative…” you were referring to “PSMA PET” scans, then I would be cautious at coming to that conclusion.

At very low PSAs, PSMA PET scans will almost always miss prostate cancers. So, if you and your doctor feel good about an ADT holiday, that’s ok - that’s shared decision-making. But, I wouldn’t base it on a negative PSMA PET scan with an undetectable PSA.

Just something to consider.

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Profile picture for brianjarvis @brianjarvis

@dpayton If by “… as both PSA scans came back negative…” you were referring to “PSMA PET” scans, then I would be cautious at coming to that conclusion.

At very low PSAs, PSMA PET scans will almost always miss prostate cancers. So, if you and your doctor feel good about an ADT holiday, that’s ok - that’s shared decision-making. But, I wouldn’t base it on a negative PSMA PET scan with an undetectable PSA.

Just something to consider.

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@brianjarvis

Hey Brian! Thanks for the comment. The first PSMA PET scan came after surgery when my PSA was at .4. The doctor wanted to see if my incontinence would repair itself so waited another 6 months. It was then .9 and had another scan done. Both(at .4 and .9) were the same, nothing found. So that's when we started ADT and Eligard for 18 months.

I know what you're saying about the scans not picking up cancer at low levels. I think at .4 and definitely at .9 something would show. Thanks again man!!!

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We live in a new clinical setting now with PSMA PET scan. Before this, recurrences were shunned because the cancer could have metastasized and location was difficult. Nowadays, if you stay on ADT for the rest of your life, you will never know if you are cured. In fact, taking a PSA test on ADT is not telling the true story. By getting off it, you will find out the extent of your cancer unhindered by low T. If the cancer has spread, maybe you can treat it with radiation. If not get back on ADT. Here is the key point: too much ADT leads to castrate resistance.

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Profile picture for dpayton @dpayton

@brianjarvis

Hey Brian! Thanks for the comment. The first PSMA PET scan came after surgery when my PSA was at .4. The doctor wanted to see if my incontinence would repair itself so waited another 6 months. It was then .9 and had another scan done. Both(at .4 and .9) were the same, nothing found. So that's when we started ADT and Eligard for 18 months.

I know what you're saying about the scans not picking up cancer at low levels. I think at .4 and definitely at .9 something would show. Thanks again man!!!

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@dpayton
I hear from people all the time who have noticeable PSA’s, 1 and above, And the scan shows nothing. That seems to be more common than finding something.

That’s why many people select salvage radiation.

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Profile picture for Jeff Marchi @jeffmarc

@dpayton
I hear from people all the time who have noticeable PSA’s, 1 and above, And the scan shows nothing. That seems to be more common than finding something.

That’s why many people select salvage radiation.

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@jeffmarc

Hey Jeff, is there any particular reason why the scans don't show anything if in fact there is something there? Also, what is the PSA where things "should" be visible?

Thanks Jeff and keep dancing!

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Profile picture for dpayton @dpayton

@jeffmarc

Hey Jeff, is there any particular reason why the scans don't show anything if in fact there is something there? Also, what is the PSA where things "should" be visible?

Thanks Jeff and keep dancing!

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@dpayton
They are called micro metastasis. They really can’t see metastasis that are smaller than 2 mm when doing a PSMA PET scan. In some places, even larger Metastasis cannot be seen.

The micro metastasis can be anywhere.

Those small metastasis can produce PSA.

A good percentage of recurrence is found in the prostate bed. That is why they do salvage radiation.

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