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.

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Profile picture for jim18 @jim18

@geneva26 Prolaris is specifically targeted for decisions for 3+4 to continue active surveillance or go to treatment. If you had this test before radiation, it was probably used in the recommendation for treatment. The Decipher test is the one that is used to predict probability of recurrence. Probably some overlap. In any case you should be having PSA tests every 3 months for the first year or 2 after ADT ends, than every 6 months to catch any recurrence early.

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@jim18 Is it useful to request a Decipher test prior to my 12 month use of Orgovyx to help make an informed decision as to continue or go to Active surveillance? Would the orginal Prolaris test be sufficient? Thanks

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Profile picture for geneva26 @geneva26

@jim18 Is it useful to request a Decipher test prior to my 12 month use of Orgovyx to help make an informed decision as to continue or go to Active surveillance? Would the orginal Prolaris test be sufficient? Thanks

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@geneva26 What was the BCR prediction from Prolaris? There is about 2/3s agreement between the two tests but Decipher is slightly superior in predicting BCR. The real question is what would you do differently based on the results of these tests? Are you thinking about staying on Orgovyx for another year? Since you have already had radiation treatment there is not much to decide except the frequency of PSA tests with every 3 months for the first 2 years being typical. It is not unusual to see a bounce after ADT ends but it should continue to trend down after that. BCR after radiation is defined as a PSA increase of 2, but you should probably start checking if it increases to 1. Until it reaches these levels there is no other action like MRIs or biopsy which could happen on active surveillance pre-treatment. If you have a BCR a PSMA PET scan will be ordered to determine the PSA source.

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Profile picture for jim18 @jim18

@geneva26 What was the BCR prediction from Prolaris? There is about 2/3s agreement between the two tests but Decipher is slightly superior in predicting BCR. The real question is what would you do differently based on the results of these tests? Are you thinking about staying on Orgovyx for another year? Since you have already had radiation treatment there is not much to decide except the frequency of PSA tests with every 3 months for the first 2 years being typical. It is not unusual to see a bounce after ADT ends but it should continue to trend down after that. BCR after radiation is defined as a PSA increase of 2, but you should probably start checking if it increases to 1. Until it reaches these levels there is no other action like MRIs or biopsy which could happen on active surveillance pre-treatment. If you have a BCR a PSMA PET scan will be ordered to determine the PSA source.

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@jim18
You made some excellent observations. Congratulations!

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Profile picture for ededed @ededed

@jime51
I quit after one year of Orgovyx in 2022. I had Gleason 8, 42 IMRT sessions, and had a lot of joint pain due to the ADT. I had pc spread to my seminal vesicles and a suspected site on the outside of the colon. My PSA has hovered around 0.1 after quitting.

Because of my concern about distant metastasis I take a daily dose of Turkey tail mushroom tea or capsules.

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@ededed

I'm trying to find some research about the efficacy of turkey tail mushroom tea and/or extract on prostate cancer. I don't see a lot of research. How long have you been taking turkey tail mushroom tea and what are your impressions of it? Thanks.

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I am not sure what BCR is but this Prolaris pre treatment test indicated a 3.1% 10 yr risk with Active surveillance, 1.7% risk with radiation therapy or surgery and 1% risk with radiation therapy and ADT. I have finished the 8 wk RT and have been on Orgovyx for 7 months and would like to cease ADT treatment as soon as reasonable (hopefully not more than 12 mo's) and go to Active Surveillance. The hematologist who prescribed Orgovyx stated the 'text book' 18 months of treatment are necessary. Any thoughts?

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Profile picture for jim18 @jim18

@geneva26 What was the BCR prediction from Prolaris? There is about 2/3s agreement between the two tests but Decipher is slightly superior in predicting BCR. The real question is what would you do differently based on the results of these tests? Are you thinking about staying on Orgovyx for another year? Since you have already had radiation treatment there is not much to decide except the frequency of PSA tests with every 3 months for the first 2 years being typical. It is not unusual to see a bounce after ADT ends but it should continue to trend down after that. BCR after radiation is defined as a PSA increase of 2, but you should probably start checking if it increases to 1. Until it reaches these levels there is no other action like MRIs or biopsy which could happen on active surveillance pre-treatment. If you have a BCR a PSMA PET scan will be ordered to determine the PSA source.

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@jim18 Please see my post below

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Profile picture for johnny8924 @johnny8924

@ededed

I'm trying to find some research about the efficacy of turkey tail mushroom tea and/or extract on prostate cancer. I don't see a lot of research. How long have you been taking turkey tail mushroom tea and what are your impressions of it? Thanks.

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@johnny8924
I've been taking it since 2021. My PSA hovers around 0.1

It took me aback when my urologist told me that I am doing much better than he expected for someone initially diagnosed with advanced PC. I also remember his words "I don't know what you are doing, but keep on doing it." He will not talk to me about Turkey tail, he changes the topic because it is not part of the standard of care.

The gold standard for medical practice is a large scale drug trial. The reason one hasn't been done on Turkey tail is that the cost of a drug trial runs from five million dollars to one hundred and fifty million dollars. The drug companies cannot make back that kind of money on a natural product used by Chinese practitioners for hundreds of years.

I use Google Scholar for searching on medical topics.

There is also research on the anti-cancer effect of turkey tail on breast cancer, colorectal cancer, and a few others.

Here's one article.

Mycochemicals against Cancer Stem Cells
https://www.mdpi.com/2072-6651/15/6/360
Note: Turkey tail mushrooms are also known as Trametes versicolor and Coriolus versicolor
PSP is a polysaccharide contained by Turkey tail.

"Luk et al. [23] demonstrated that the PSPs isolated from cultured mycelia of the Cov-1 strain of Trametes versicolor (L.) Pilàt target prostate CSCs in vitro and suppress tumour formation in vivo. Treatment of prostate cancer cell line PC-3 with PSP led to the downregulation of CSC markers (CD133 and CD44) in a time and dose-dependent manner. Furthermore, PSP pre-treatment significantly suppressed tumour initiation of PC-3 cells in immunodeficient mice, suggesting that PSPs suppress the tumourigenicity of the PC-3 cells. It is worth noting that the administration of PSPs through oral feeding to transgenic mice that naturally develop prostate tumours resulted in the complete suppression of prostate tumour growth. This finding suggests that PSPs may serve as a potent chemopreventive agent against prostate cancer, potentially by targeting the prostate cancer stem cell (CSC) population. The relevance of PSPs on prostate CSC control was also highlighted in two later studies reporting the control of CSCs and the gut microbiome by the PSP-derived mycelia of the medicinal mushroom T. versicolor strain [15] and the occurrence of potent anti-cancer synergistic activities through targeting of CSCs between PSP and gamma-tocotrienol [24]."

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Profile picture for geneva26 @geneva26

I am not sure what BCR is but this Prolaris pre treatment test indicated a 3.1% 10 yr risk with Active surveillance, 1.7% risk with radiation therapy or surgery and 1% risk with radiation therapy and ADT. I have finished the 8 wk RT and have been on Orgovyx for 7 months and would like to cease ADT treatment as soon as reasonable (hopefully not more than 12 mo's) and go to Active Surveillance. The hematologist who prescribed Orgovyx stated the 'text book' 18 months of treatment are necessary. Any thoughts?

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@geneva26 So you are going for the 1% risk with ADT. The length of ADT with the NCCN 2026 guidelines depends on the severity indicated by Gleason scores (and a few other factors such as cribriform detected, ECE, etc.). A standard 3+4 is usually 0-6 months of ADT; 4+3 at 6-12 months; and 4+4 local is where you get more than a year. Discuss this with your doctor and go for a second opinion if necessary. The length of ADT has been lowered in recent revisions of the guidelines.

Longer is better for prostate cancer control but may not be better for you factoring in lifestyle impacts and other health risks from ADT. I do not know what side effects, relationship issues, health changes (bone loss, heart etc.) are impacting your life from the ADT and neither does your doctor. What is the sense of a little better control of prostate cancer if it wrecks your life.

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Profile picture for geneva26 @geneva26

@jim18 Please see my post below

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@geneva26 Also see the post ADT or no ADT. It has a lot of good information.
BCR= Biochemical recurrence defined as PSA >2 over lowest value which will be zero in your case on ADT. You can expect an increase when you go off of ADT. That is why you will have the PSA tests every 3 months to detect if there is a rising trend.

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Profile picture for jim18 @jim18

@geneva26 So you are going for the 1% risk with ADT. The length of ADT with the NCCN 2026 guidelines depends on the severity indicated by Gleason scores (and a few other factors such as cribriform detected, ECE, etc.). A standard 3+4 is usually 0-6 months of ADT; 4+3 at 6-12 months; and 4+4 local is where you get more than a year. Discuss this with your doctor and go for a second opinion if necessary. The length of ADT has been lowered in recent revisions of the guidelines.

Longer is better for prostate cancer control but may not be better for you factoring in lifestyle impacts and other health risks from ADT. I do not know what side effects, relationship issues, health changes (bone loss, heart etc.) are impacting your life from the ADT and neither does your doctor. What is the sense of a little better control of prostate cancer if it wrecks your life.

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@jim18 That makes a lot of sense. Thanks for your comments!

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