Is Decipher after RARP overkill?
I'm now 4 weeks post-op for RARP at Mayo Jax. Now I have my 3 month PSA and f/u visit scheduled.
Surgery and Path reports were all good news, no spread, negative margins, 2 lesions (1cm x .5cm x .5cm, .3cm x .3cm x .3cm), along the way I was downgraded from 3+4 to 3+3, was tested and I have no genetic mutations.
From biopsy 4 years ago, the first (and only known lesion at the time) had a biomarker test (not Decipher, but from another company) and it was low risk for spread.
Here's my question. Should I ask doctor to order a Decipher test on my prostate? Yeah, all signs are good (and believe me, I am very grateful for where I am, having a dear brother pass away from metastatic prostate cancer), but seems like having a Decipher on both lesions would be good info to have. Second lesion was not found on my original biopsy 4 years ago and thus was never Decipher tested. Or maybe this is overkill?
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@jeffmarc Oh c’mon….Jeff Marchi or AI…is there a difference? And YES, that is a compliment!😉
Phil
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2 ReactionsI got an Artera AND a Decipher after RARP. So, yes, i think it is valuable. Medicare covered both for me, do nothing out of pocket. I got a new Decipher because my post-RARP Artera scores conflicted somewhat with original Decipher. (Artera is a new test based on an AI model, its fairly new and not as utilized as Decipher, but gets you another data point). As an aside, somehow my new Decipher risk level went from 93 to 75%.
NOTE - I suggest that you ask for the complete Decipher report. A 2 page patient copy is normally all that is offered, but there is a much more detailed (and complex) version produced for the doctor. its much more analytical, but a lot of potentially useful information if you want to dig in. I looked at both of mine, its pretty interesting stuff. I think there are websites that explain this more detailed report. I dont know if the release of the "doc version" is something is normally done.....
NOTE2 - Changing topics - I have been told that a new and promising treatment identified for Luminol B cancer (was identified in my Decipher report). I havent had a recurrence of this more aggressive cancer, but good to know there are new and exciting treatments on the horizon.
As always, let me point out that I am not a doctor, and my opinions are just that. Please consult with your treatment team to determine your best course of action.
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4 Reactions@mlabus3 Thank you! This is great info.
@heavyphil
It’s funny you should make this comment about this particular question I answered up above. I actually thought about it for a while after posting, thinking whether I should say that I only added the AI for other people’s further information, and what I said above the AI information i knew was factual and really didn’t need to confirm it with AI. I just decided not to do that.
I’m not always correct, but I appreciate your confidence in what I say
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1 ReactionI would definitely have the Decipher Test. It is a broad look at, and for, 22 prostate cancer-specific genes. You may be a 3+3=6, but you may have some unfavorable genes that could influence the growth, aggressiveness, and outcome that a surgical pathology report could never tell you. You may likely know, but basically, the genetic testing is done, and you have a Decipher Test "Score" of 0.1 - 1.0. You are also presented with 5 year, 10 year, and 15 year mortality/survival risk assessment... probabilities based on the genes you have. You want the lowest score possible, but, even higher scores do not have to be ominous. My Decipher Score was 0.50, dead in the middle, but based on the actual genes that I have, my longevity scores were good ranging from 4.5 - 7.4% mortality, meaning for the next 15 years I have a 92.6% - 95.5% probability of surviving/living. I may have difficulties and annoyances along the way, but per the risk assessment, I should still be alive at 85 years old. Add to that my known familial longevity for males - on both sides of the family - and I could live well into my 90's: both grandfathers lived to 96, with one having prostate cancer (no RP surgery), and my own dad lived to 99 years 10 months "with" prostate cancer (PSA = 200 +). His death certificate says prostate cancer as cause of death, but he was just worn out from all of the UTI's and how it depleted him. I'll take what God gives me...it is in his hands.
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5 ReactionsLayman here: In retrospect, I would have the Decipher or other genetic testing. The information may be valuable now or in the future for treatment.
I went from Biopsy in July 2022 to surgery in August and Salvage Radiation Treatment w/ short term ADT Feb - June 2023.
And I have had undetectable uPSA for over 2 yrs. So very successful treatment in total to date.
I asked my RO about the Decipher test in early 2023 and he responded that it would not change his treatment, so it was not ordered or pursued.
While the Decipher was relatively new then, clearly it has become more common since
My concern is that if/when my PSA rises in the future, will there be treatments based upon the specific genetics and I may not have that information available.
So in retrospect, I would like to have that piece of knowledge in my file for possible future need and use. I thought that I needed to to test the Biopsy or Path samples in the first 12 mos or miss the window; and perhaps that information is inaccurate.
Best wishes.
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3 Reactions@michaelcharles
A decipher test really doesn’t test anything about your genetics. It will tell you the likelihood of having a reoccurrence in the next five or 10 years.
Have you had a hereditary, genetic test? That can tell whether or not you have a genetic issue that could make it possible for the cancer to come back, The decipher test won’t tell you that.
The fact that you had your PSA start to rise and needed salvage radiation makes it likely that it will happen again. A decipher test could tell you how long a time that could take.
What your doctor said about it wouldn’t change your treatment is true. It would just give you information about your future.. If your PSA started to rise, you would be put on ADT and maybe an ARPI since you’ve already had one reoccurrence.
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1 Reaction@jeffmarc A friend had RARP 5 years ago and just had Decipher done. So, yes, they do a good job of preserving the tissue.
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