Decipher Results and Outcomes: Anyone had similar?

Posted by namrac @namrac, Jan 3 7:05pm

I am curious if others have had similar results on their decipher test and outcome. I have added my results and up to date information.

I was diagnosed with a PSA level of 5.5 two years ago. Eight months earlier, it was 2.5. I wasn't feeling well, so I had a complete battery of tests, all of which came back negative. My doctor suggested running a PSA test, which I agreed to, and thus began my journey.

I had a prostatectomy on January 16, 2023. Four lymph nodes and the left seminal vesicles were positive and removed, along with a total of 19 lymph nodes but there was no distant spread Stage 4a. My PSA level was undetectable 8 weeks post-surgery and remained undetectable for the first 6 months. Then it started to rise slowly. When it reached 0.13. Off to the oncologist (who only does pc for 20 plus years) on April 9, 2024, and started Orgovyx.
Before starting radiation therapy, my PSA was undetectable again because of this drug I began radiation on April 23, 2024. After radiation my PSA was >.01 until October 2024 where it went to .02 which freaked me out a bit, not the oncologist.

I had my surgeons appointment in November and my PSA came back >.02 which I think is as low as his lab goes unlike the oncologist. I felt a bit better this time . I would love to head others experiences it helps.

Shared files

Decipher Redacted_Signed (Decipher-Redacted_Signed-3.pdf)

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

@imbimbo

So this tells me that there is little science in these scores unless the slides are so obviously abnormal. I had two biopsies with first being interpreted as 3+4 and then read at Hopkins giving them a 3+3. A second biopsy a year later was 3+3 verified using AI. I get a third biopsy on Monday afternoon. My decipher on the first biopsy came at .37 low risk.

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Why not use PSE or EpiCaPture tests? They would show the presence of aggressive cancer needing treatment.

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@heavyphil

Why not use PSE or EpiCaPture tests? They would show the presence of aggressive cancer needing treatment.

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Never heard of these and doctors never mentioned them.

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@imbimbo

Never heard of these and doctors never mentioned them.

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They are new so probably not mainstream yet. But there are other urine tests you should research.

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After several years of biopsies and repeated PSA tests, my PSA finally peaked around 5.0 and the most recent biopsy (June 2017) indicated cancerous cells, all contained within the prostate itself. I elected for total prostatectomy via robotic surgery to protect nerves and allow for continued erection and orgasm post-surgery. PSA levels were basically undetectable until January 2024; at that time, 0.25. My urologist was not concerned at that time with slight rise. I had been quite active, cycling, playing sports, traveling, farm work, etc. up to that date. In January 2025, my PSA rose to 0.56 and a PET scan was done. Results of PET scan were negative with no indication of cancer anywhere in the body. However, my urologist referred me to a urological oncologist who recommended immediate radiation treatment with testosterone depression medication. My testosterone levels, even after bio-identical hormone replacement (SottoPelle pellets), remained fairly low, from 250-450.
I'm scheduled for another PSA test within the next week just to see if there has been any increase even since January.
Given the possible side effects of 5 days a week/8 weeks radiation along with hormone depletion treatment, I'm questioning whether to pursue this course of action. Again, negative PET scan, so assumption would be to treat the prostate fossa since that's the best 'guess', so to speak.
I'm 75 and in relatively decent health; however, I was diagnosed in 1999 with fairly severe post-polio syndrome which has resulted in continuing muscle atrophy and weakness.
Just wondering whether or not to pursue the recommended course of therapy or wait and see if another PET scan may reveal something more specific.
In the summer of 2017, a rather major paper was released that basically stated that a man of my age (67 at the time) with the type of cancer I had along with my Glisan score would most likely survive 10-15 more years without surgery or radiation at the time.
Any thoughts from other folks with similar findings and near the same age as me?
Thank you

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@ericwitherspoon
MCC was started so users could share their personal experiences. I can't give you medical advice of what to do or not do. What you are contemplating is a serious decision. From what I read in your post your PSA was not that high but you did not post how fast it was rising. It is that rising PSA that concerns most urologist.

Per my R/Os (two different ones) prostate cancers are mostly found at cellular level. Thus a biosy might not find cancer or not find a more advanced (higher Gleason score) present in prostate not biopsied. Removing your prostate is something I have no personal experience with. But my understanding from my urologist and R/Os with prostate removed you PSA should be at non detectable number because you no longer have a prostate.

What I would highly suggest from my personal experience with having prostate cancer and not sure what to do is suggest getting a second opinion to help you decide what to do. That is what I did and many many others on MCC have done also.

You already made the decision to have RP. Back then, were given options of different types of radiation treatments. We all have had medical professionals saying we will die from something else and then the survival rates etc. comments. That is why it is such a personal decision based on what you want for your life and should be made by you after research, second and even third opinions. If in doubt, and it seems you are, my suggestion like I made was to to get second opinion.

My second opinion on diagnosis and treatment was same as original diagnosis/treatment. The only difference is I chose to have proton radiation versus photon. And I based that decesion on research, first and second opinions with two different R/Os consultations (different medical institutions) and my primary care doctor.

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@ericwitherspoon

After several years of biopsies and repeated PSA tests, my PSA finally peaked around 5.0 and the most recent biopsy (June 2017) indicated cancerous cells, all contained within the prostate itself. I elected for total prostatectomy via robotic surgery to protect nerves and allow for continued erection and orgasm post-surgery. PSA levels were basically undetectable until January 2024; at that time, 0.25. My urologist was not concerned at that time with slight rise. I had been quite active, cycling, playing sports, traveling, farm work, etc. up to that date. In January 2025, my PSA rose to 0.56 and a PET scan was done. Results of PET scan were negative with no indication of cancer anywhere in the body. However, my urologist referred me to a urological oncologist who recommended immediate radiation treatment with testosterone depression medication. My testosterone levels, even after bio-identical hormone replacement (SottoPelle pellets), remained fairly low, from 250-450.
I'm scheduled for another PSA test within the next week just to see if there has been any increase even since January.
Given the possible side effects of 5 days a week/8 weeks radiation along with hormone depletion treatment, I'm questioning whether to pursue this course of action. Again, negative PET scan, so assumption would be to treat the prostate fossa since that's the best 'guess', so to speak.
I'm 75 and in relatively decent health; however, I was diagnosed in 1999 with fairly severe post-polio syndrome which has resulted in continuing muscle atrophy and weakness.
Just wondering whether or not to pursue the recommended course of therapy or wait and see if another PET scan may reveal something more specific.
In the summer of 2017, a rather major paper was released that basically stated that a man of my age (67 at the time) with the type of cancer I had along with my Glisan score would most likely survive 10-15 more years without surgery or radiation at the time.
Any thoughts from other folks with similar findings and near the same age as me?
Thank you

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If you are 75 I would think twice about additional treatments. If the PET is negative two times why are they putting you thru all this? Probably so you can’t sue them. I have been on active surveillance since 2018 when I was first told my PSA was over 4. I have had three biopsies. The first two were Gleason 6. The last one found 5 or 10% of the lesion had 3+4. I got a second opinion at Hopkins in Baltimore. They allow the pathologists to go over their findings. Mine said if I treat this cancer I would be treating it for 29 years in the future. He said unless MRI shows additional lesions or the PSA goes crazy (mine just hit 10) I could stay on surveillance. Yes the 15 years prognosis is the same no matter what you do if you have low grade cancer

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Thanks very much for your response! I had so many biopsies prior to the 'final' one that actually showed cancerous cells (as opposed to non-neoplastic but 'irregular' cells), that I kidded about not needing a prostatectomy since I'd already had a majority of my prostate removed by so many biopsies.
As I said, the PET scan from early February was completely negative, so the recommendation of the urological oncologist was basically 'let's just zap the area where the prostate used to be and hope for the best.' I asked about another PET scan in the near future but was met with skepticism. Could also be that I was out-of-pocket only $250 for a $18,000 procedure. I agree with you that an additional PET scan, if anything showed up, would pinpoint where any metastasis might be rather than just hoping they hit the right spot with radiation.
Mine was indeed a low grade cancer.
Thanks again

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