After 27 months of undetectable PSA I recently got my first detectable PSA of 0.01. Obviously this is still very low, and after this many months of an undetectable PSA I am hopeful that I will avoid an aggressive recurrence. Clearly the next reading in December will be interesting.
However, I am beginning to think about what the next months or years might be like if the PSA does start steadily rising.
So I would like to ask about people's experiences with the Decipher test, for those who took the test after RP.
Two years ago, the surgeon who did my RP quite rightly said the results would not mean anything at that point.
But if my PSA starts rising from say 0.01 to 0.05 and up, I am inclined to take the test if insurance would cover it, and if the hospital still has my prostate sections stored away somewhere.
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Ribotom
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I had the decipher test because of a rising psa. It came back low risk so I waited 5 years before srt psa at the time of srt .16 . Insurance wouldn't cover it but my urologist office got me in contact with the company rep, I locked the price in at 100 dollars for the test.
I recurred after 5 months and tracked it for 8 months before having eSRT plus ADT plus abiraterone at PSA of 0.117. 8 months of abi was all I could handle, but went 12 months in the ADT,… T recovered after about nine mo ths and I am now two years since then undetectable.
My PSA was doubling every 4 months (albeit at U-PSA levels only) and I have young kids so I did Decipher a few months after recurrence. Cost was can A$4000, or about U$3000. It came back ugly - 0.91, 48% chance mets, 27% chance PCa death within 5 or 10 years, I don’t recall precisely.
Anyway, the really crap result prompted me to get very early eSRT and amp up the hormone treatment with the abi. I was pT3b, and most papers I read indicate that SVI really cuts chances of a cure, so this was another factor driving me to go hard.
My MO just suggested I don’t come back for 6 months this time, he thinks we might have pulled off a cure - I’m not sure I share his optimism, but I do know that the Decipher result was integral to my decision making. In fact, I have been trying to talk Peter Mac into a project to make it more available in Australia… I had to arrange it with the US directly and that’s a bit of a hassle.
Best of luck to you - my guess, which is worth nothing, is that your score would come in low - and for my money, that would be great reassurance to have. And if it doesn’t, then you would be driven to act.
Thanks for the replies so far. Perhaps I should add that I just turned 58, so I am on the young side, and still 7 years away from eligibility for Medicare (if we retire in the USA — my wife is British and sometimes tries to convince me to retire in the UK, which adds a whole new layer of complication to trying to plan for the future). (I assume I would be ineligible or not rich enough for private insurance in the UK if we were to retire there — maybe I should DM ukpete).
I am by no means assuming that my PSA will get to the treatable level. And I am not asking a PSA question, just asking about people’s experiences with Decipher.
I just wonder if that test is a scam. It's like $5,000 US$ and it showed me at low risk. Not sure how I am low risk with a Gleason of 9 and the cancer is outside the prostate area and the doctor saying it's a high risk aggressive cancer.
I will defer to the expertise of others on the finer points of the Decipher test, but I will say one thing about it. The RP version of the test can only be done on small bits of the prostate after it has been removed. Any metastases in other parts of the body may well differ from the sampled bits of prostate. I guess in principle these differences could be in either direction … Meaning that the prostate bits used for the test could be either less bad or more bad than the metastases. Anyway, my take is that if the Decipher results suggests a high risk of serious metastasis, then I would use that info to help make a treatment decision. But if the Decipher results suggest a low risk of serious metastasis then I might not use the Decipher data in my decision. Of course all of this is subject to the advice of my team.
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