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How long does it take to get your Decipher test results usually?
I had my prostate biopsy 7/6. I still don't have my Decipher score. Today the doctor's nurse told me that sometimes it takes a while for them to receive the tissue samples through the mail, and she didn't think that they had them yet!
What is the experience of others?
Maybe I'm paranoid but a couple of scenarios have come to mind.
1. They forgot to send them!
2. They got bad results and want to tell me in person rather than post in My Chart.
3. They got lost in the mail.
I assume that if they had a good outcome that they would have been posted by now. I'm supposed to have another PSA test next month and see the doctor in November. I can't imagine that he would make me wait until then to share the results no matter what they are. Needless to say the waiting is killing me (figuratively, I hope).
Any thoughts?
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@keithl56 Best of luck. Feel free to post back here with any follow-up questions.
I'd definitely ask about ArteraAI. It's a much newer test, so not all doctors are familiar with it. But two oncologists I really trust both recommended it strongly for situations like yours.
I sent a message through my portal to the doctor at JH t gauge his familiarity with this test. He is very open minded and involved with clinical trials so hopefully he'll be on board with this.
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1 ReactionDecipher score requested on 7/10. Results never provided. Providers can see more in information in MyChart than patients. I asked the RO assistant after a month and they found the score. After I got off the phone I poked around MyChart and found the Decipher score results posted as an attachment to my biopsy results, not as a separate test. Turned out the Decipher score took 6 days. Stupid idea.
@keithl56 I’m no expert but would also push for testing to be done on the more aggressive sample.
I had my biopsy 7/28 and Prolaris test results 2.5 weeks later. No one seems to know the status of my hereditary testing also done at biopsy though. Best of luck to you
@keithl56
Decipher testing is expensive, insurer’s typically won’t cover for six’s, although it will still give same information from that material. They don’t need the seven, but is standard to send highest Gleason. In your case with a 7 and not enough material they can probably get it approved.
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1 Reaction@ireland1964
There is not enough of the pattern 4 cells left to do a Decipher test. The only way to do that would be to go through another biopsy and hope that they hit the right cancer cells.
Another poster recommended a test that is not genomic but is based on AI interpretation of the existing tissue sample slides. That is my focus right now.
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1 Reaction@wheel1
What would be really aggravating is if Veracyte charges for 2 tests even though they destroyed the pattern 4 sample without providing results. It sounds as though JH got insurance approval since they are sending the Gleason 6 sample.
My concern is that I suggested that they do an ArteraAI test on the existing pattern 4 slide (which is not destructive) instead of the Gleason 6 decipher since the results are likely to be more accurate. If insurance already paid for the Veracyte test they may not cover the other. I might have to pay for that out of pocket.
I am really getting frustrated. I can't help but think that somebody screwed up for this to happen, either at JH or Veracyte.
In my case it took 5 weeks from the date of the biopsy to get the results– and I'm fairly sure they submitted the sample promptly.
@keithl56
Decipher it not the ends all to everything. Their are other tests that can help determine your course of direction. If you were highly likely going forward with treatment anyway versus AS and wanted a low Decipher to to tip you to AS, and decided on AS you would be continuing probably mri’s and biopsy and finally make a decision. The ExoDx urine marker test which assists in determining the need sometimes for a biopsy can also give you a feeling on the nature of the likelihood of your having clinically significant cancer. It’s certainly not decipher. My decipher was not going to tip me, I was going for surgery based on my biopsy anyway and my decipher order was just the process of being my workup and it happened to come back at 70. My ExoDx was 40.
A factor in trying to AS if possible is my comorbidities. I was weighing doing AS for a while to maintain quality of life. I have multivessel CAD (with a Coronary Artery Calcium over 1300) and my cardiologist told me over 8 years ago that I likely would have a major adverse coronary event within 5 years (so far so good). I also have cerebral microvascular ischemia which has already resulted in white matter disease and lacunar strokes. To top it off I had a positive colon cancer test last month and am awaiting a colonoscopy. Therefore, I figure why suffer through surgery or radiation and subsequent side effects when something else is likely to get me before the prostate cancer. However with a low Decipher and close monitoring and the PC gets worse then I could reevaluate the situation.