Why are urologists dismissive about Decipher?
I have talked to four urologists. All four told me that the Decipher score does not change their assessment. On the other hand, the oncologist and the three radiologists I talked to all stressed it. Why is it perceived so differently?
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Hi breadmaker,
Just curious, what is you PSA, and did you have any lesions identified during an MRI with our without contrast? My Gleason score results are very similar to yours, but my PSA is 8.4 and I had two lesions identified as Pirads 4, but no cancer was identified in either lesion. Thanks.
Edtrucks -
My PSA is 4.4. I'm doubling the lab number of 2.2 since I'm on Finasteride.
My MRI in 2018 had one lesion with a PI-RADS of 2.
My MRI in 2022 had an odd report of "category not applicable, no category 4/5".
I should have asked about that last report but didn't. Maybe no lesion? I'm slowly learning to pay more attention to the reports, to ask questions and to be a better advocate for myself.
What is anxiety provoking for all of us is not knowing what is the definitive course of action. Instead it's a risk assessment and we as patients need to be active participants.
If I'm following properly you haven't had a Decipher test, so I'd suggest you get one.
Then check out -
https://connect.mayoclinic.org/discussion/using-decipher-grid-report-to-help-guide-your-treatment-decision/
Hopefully, that link works for you.
It's a post that @handera started titled "Did Decipher GRID report help guide your treatment decisions?".
Decipher is a genetic test. It's done on the core with the highest cancer.
There's a study called Promise that will give you a genomic report. This will be on you - body and soul. Well, just body. 🙂
The Promise study is closing soon but you might still be able to participate - no cost to you.
https://connect.mayoclinic.org/discussion/promise-study-registry-of-pca-genetics-and-outcomes/
All the best to you.
When asked, my urologist said my 4+3=7 intermediate risk unfavorable dx treatment recommendation (RO or Surgery) already determined so Decipher test wasn’t necessary. RO said same thing and Urological Oncologist Surgeon said same thing.
Same with me. Urologist determined my Gleason 7 (3+4), PSA 10.6, as unfavorable intermediate (8 of 14 cores positive). Radiation Oncologist said that Decipher was not necessary. I completed my 5-fraction SBRT treatment from April 9 to 21, 2025.
Breadmaker,
I was curious about your PSA and MRI results compared to mine because while I made the decision to have radiation, I struggle with that decision. Did I really need to go to that extreme?
(I am on my 24th session of 28) Like you, I had only one biopsy result of 3+4 (less than 5%). I considered AS, but the combination of the doctors telling me that any Gleason 4 should be dealt with (really?), my 8.4 PSA, (I struggle with the inconsistencies of what is a high PSA value) the thought of more biopsies, (barbaric at best) plus the upside of not having to have testosterone therapy with the radiation due to the 3+4 favorable rating, supported my radiation decision. It was the least invasive, and frankly I would like to move on from the cancer.
Surgery to me was out of the question, especially with the minimal cancer found and the side effects of the procedure. It was difficult as you mentioned to have to determine our own course of action. My doctors were not recommending AS. I did not have a decipher test. I asked my urologist about it and he brushed it off. I don't think it would have made a difference in my decision.
I'm in no way suggesting you take the same path as I did, just sharing my experience. I like to believe the statement that more men die with prostate cancer than from it, and if true, that would mean making the right decision to not remediate. If I found 10 people that had a similar prognosis to mine, and did what I did, I guess I would be more secure in my decision. Your prognosis was very close with the biopsy Gleason results, but your lesion ratings and lower PSA were significantly different, if that in fact truly makes a difference. Thanks for sharing your information and I hope you the best in the choices you make.
Edtrucks -
My first urologist - he's now retired - put me on Active Surveillance. When I got my 3+4 with my new urologist, I had been on AS for six years.
So, in my case - and it matches my personality - it's inertia and analysis paralysis. Not any deep thinking or research on my part.
Also, I had joined a virtual support group that was just about all men that had advanced in their treatment, and some of their stories heightened my anxiety about treatment. I should have realized that I wasn't dealing with a general population of those treated, but a self-selected group that wasn't happy with their results.
I now attend an ancan.org support group. They have their groups split up by category - Under 60, Military, Low/Intermediate AS, Low/Intermediate (discussing treatment) and High Risk.
https://ancan.org/prostate-cancer/
I hope more support groups do this in the future. AnCan is the only group that I'm aware of that does this.
You made the right decision for you and you can now put this cancer in the background and focus on living!
La dolce vita.
In my case, the R/O recommended Orgovyx for my intermediate unfavorable prostate cancer prior to starting radiation. I went into that meeting determined to resist hormone treatment at all costs. He said, "I've never had a man sit there and tell me he wanted hormone treatment." So he offered the Decipher test, as it would show whether or not I needed hormone treatment. I agreed, and Decipher came back High Risk, so I started the Orgovyx and am glad I did. I credit the R/O for getting me over my initial objections and I credit Decipher for confirming in writing that I needed the hormone treatment. That' s my story.
@brian5837 I also credit my RO for putting me on Orgovyx. I was initially offered the once in 3 months ADT injection but I said I was anxious about its side effects that I have read in this support group.
The urologist who did my biopsy also classified me as unfavorable intermediate, Gleason 7 (3+4), positive on 8 of 14 cores.
He presented me the options to have either SBRT, RARP or open surgery (the latter he does with another surgeon in a regional hospital, for the other two he referred me to a cancer center). After comparing the side effects and risks listed in the consent forms for RARP and SBRT, and considering my family's concerns/worries about surgery at my age, I chose SBRT with Orgovyx starting two weeks before my treatment Aprl 9-21. My oncologist said that we would see if I could discontinue Orovyx after 8 months or a year.