Recently diagnosed stage 1 prostate cancer

Posted by kyndats @kyndats, Nov 16, 2025

Recently diagnosed with stage 1 prostate cancer, Gleason 6, PSA 4.87, and Decipher 0.78 . Prior to getting the genome Decipher score my doctor and I were comfortable with Active Surveillance. Don’t have my next consult with him for another week and a half. Does that Decipher score knock me out of the Active Subeillance box?

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That decipher should have you in talks with several urologists as to the best course of action. Mine was just a bit less than that and it took me from active surveillance to surgery in a heartbeat.

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Profile picture for survivor5280 @survivor5280

That decipher should have you in talks with several urologists as to the best course of action. Mine was just a bit less than that and it took me from active surveillance to surgery in a heartbeat.

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@survivor5280
Thank you for the advice. Was trying to avoid surgery at all costs but it doesn’t look as if that’s an option now.

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Profile picture for kyndats @kyndats

Thank you. Yes the 0.78 Decipher score is in the very high risk category. And the test was done from the same core samples. I am concerned with the inconsistency between the Gleason and decipher. I wonder if something else may be driving the Decipher or, as you mention, perhaps it’s the subjectivity problem with the Gleason. I plan on discussing this inconsistency during my next consult and inquire about sending my results to a center of excellence for another opinion considering the odd results. Also thinking of inquiring about a Pet Scan to see if there is anything else there that may be the driving factor.

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@kyndats I also have conflicting DECIPHER and Gleason: low risk but Gleason 9.

That is unusual but not unheard of. Gleason and Decipher measure different things, or there’d be no point in both tests.

My RO had no problem with it.

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@kyndats
We on MCC should not give you diagnosis or medical instructions. We can share with you our personal experiences.

When I had my biopsies they mirrored my MRI (susicious areas), and biopsies from all over my prostate were done. Why all over? Because taking biopsies only from part of prostate from MRI suspicious areas does not show you what is going on with rest of prostate. We are most of the time talking (in early stages) celluar differences in cells of your prostate. A biospy will be done by your urologist and the scope of how much of your prostate is done is decided by your urologist.

I mentioned this not from medical professionalism but to share my personal experience with this and what my urogolist from both Mayo and UFHPTI told me why the take not just a 1% or only one small area of prostate but an overall look at the prostate cells throughout gland. It was the same medical opinion of my R/Os saying they don't just raidate and treat the biopsies but the entire prostate so they would not miss a part of prostate that may have cancer and not caught by biopsy.

I can pass on my experience. From my experiened with PC and my medical doctors your Gleason Score does not match your Decipher. If that was me I would get a second opinion on the biopsies and or consider having it done again. I got a second opinion even when the information given to me was not contradictory but because I wanted to separate opinions from medical professionals.

I see you had transrectal. That procedure does not give the urologist the same abilities as transpernia.

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Appreciate your insights. Thank you. I fully understand your warning regarding diagnostics and medical instructions from the MCC community. All of you have helped tremendously in gathering information so that I have intelligence questions to ask at my next consult. Will definitely inquire about a second opinion and diagnostic review.

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Profile picture for rotate @rotate

@kyndats I also have conflicting DECIPHER and Gleason: low risk but Gleason 9.

That is unusual but not unheard of. Gleason and Decipher measure different things, or there’d be no point in both tests.

My RO had no problem with it.

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@rotate thank you!

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If you have “discordant” diagnostic results, that means more diagnostics are warranted today rather than just moving in with the standard AS protocol. Consider another MRI that is from the latest MRI Scanner, T3 or T7 rather a scanner from 10-15 years ago. Believe it or not, urologists miss the core of the lesion the MRI identified. Hence, they didn’t collect pattern 4 cells. Then that means your G6 is not reliable. There is chance of G7. That ultimately means you can still be AS or you forced to treatment as you deem best in your case.

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Your Gleason 6 and PSA 4.87 are the best news, but the Decipher Score says that you have one or more of the 22 prostate cancer-specific genes that will change your course of treatment, and perhaps longevity or probability of recurrence. There are gentlemen who will offer that they are BRCA-2 gene carriers, which changes things quite a bit. I don't know which of the genes are most ominous to carry in your genome - seems that there should be a list of important, highest-risk genes, but I haven't seen one yet. If you were a Decipher of 0.5 or less, you would have much less to worry about, but you clearly have one, likely more than one, genes of concern. Do you have a copy of your Decipher Test report? If not, request it from your urologist or directly from Veracyte Labs in San Diego. They invented the proprietary test...no one else does it but them. My physician didn't think that I need the test, but I insisted. When my urologist did not provide the report to me, I called Veractyte directly. They are EXCEEDINGLY professional and courteous. I had my report 10 minutes after I hung up from the call. The report will detail a lot of things for you. If you do not understand things, it can help you focus on what questions to ask your urologist. You can even call Veracyte Labs back and ask for someone to talk to (they offered me that as well). Good luck to you.

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Profile picture for rlpostrp @rlpostrp

Your Gleason 6 and PSA 4.87 are the best news, but the Decipher Score says that you have one or more of the 22 prostate cancer-specific genes that will change your course of treatment, and perhaps longevity or probability of recurrence. There are gentlemen who will offer that they are BRCA-2 gene carriers, which changes things quite a bit. I don't know which of the genes are most ominous to carry in your genome - seems that there should be a list of important, highest-risk genes, but I haven't seen one yet. If you were a Decipher of 0.5 or less, you would have much less to worry about, but you clearly have one, likely more than one, genes of concern. Do you have a copy of your Decipher Test report? If not, request it from your urologist or directly from Veracyte Labs in San Diego. They invented the proprietary test...no one else does it but them. My physician didn't think that I need the test, but I insisted. When my urologist did not provide the report to me, I called Veractyte directly. They are EXCEEDINGLY professional and courteous. I had my report 10 minutes after I hung up from the call. The report will detail a lot of things for you. If you do not understand things, it can help you focus on what questions to ask your urologist. You can even call Veracyte Labs back and ask for someone to talk to (they offered me that as well). Good luck to you.

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@rlpostrp thank you for your insights. I do Not have a copy of the Decipher test report. It would be very interesting to see what it says specifically so that I could arm myself with intelligent questions for my consult about treatment options.

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Profile picture for jopocop @jopocop

If you have “discordant” diagnostic results, that means more diagnostics are warranted today rather than just moving in with the standard AS protocol. Consider another MRI that is from the latest MRI Scanner, T3 or T7 rather a scanner from 10-15 years ago. Believe it or not, urologists miss the core of the lesion the MRI identified. Hence, they didn’t collect pattern 4 cells. Then that means your G6 is not reliable. There is chance of G7. That ultimately means you can still be AS or you forced to treatment as you deem best in your case.

Jump to this post

@jopocop
My MRI was a T3. Would be nice if I was still a candidate for AS. Thanks for your thoughts.

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