How long does it take to get your Decipher test results usually?

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.

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.

@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.

@keithl56
Agree with Ireland1964 that you are balancing a lot and with your health issues I imagine jumping from one to the other as they move up in priority. Do whatever is necessary to keep the ball moving forward. All the best

@keithl56 Hey, I was the commenter on your other thread who suggested you contact Veracyte directly. I'm glad that worked out for you -- they were very helpful when I had to deal with them, too.

I agree fully with your interpretation here. If your Decipher risk score comes back high, then that would be cause to skip AS. But a low risk score would not be conclusive because of the use of Gleason 6 tissue.

If you get pushback from your doctor on this, I recommend standing your ground because your concerns are legit. Relevant anecdote: I had Decipher testing done both on my needle biopsy tissue and on my prostate tissue removed during RALP. While the overall risk scores were close, the underlying genomic details -- which I saw by requesting the GRID reports for each test -- were wildly different. It was as if two entirely different patients had been tested: the gene expression scores were meaningfully farther apart for more genes than they were close together. The fact that the risk scores turned out similar was a fluke: both tests happened to characterize the cancer as highly aggressive, it's just that the two samples appeared aggressive in very different ways.

I wound up discussing this with multiple oncologists at top COEs, and the answer I got was that Decipher testing is very vulnerable to what's known as tumor heterogeneity (feel free to go down the rabbit hole of researching that). Decipher does not directly sequence the DNA of the tumor cells in the way that certain somatic tests do; rather, it evaluates the phenotype of the cancer by looking at the strength of expression across a set of gene signatures. This, apparently, can be more prone to sample-driven fluctuation than direct gene sequencing.

I still think Decipher has value at various stages of diagnosis and treatment, but this experience has significantly tempered my prior inclination to really lean heavily on the specifics of the results.

What I would recommend in your case, if the Decipher comes back low, is that you ask your care team about supplementing with a second test using a different protocol. You might want to consider ArteraAI, since that does not require tissue samples be sent (and it seems like you have limited Gleason 4 tissue available): Artera uses digital images from the pathology slides that your biopsy lab has already prepared.

Here's an overview of the test that shows a sample report on page 9:
https://artera.ai/wp-content/uploads/ArteraAI-Prostate-Test-Guide.pdf

@notpetecrowarmstrong

Thanks for steering me in this direction. I contacted Artema yesterday and they responded promptly. Today they confirmed that they have done testing for Johns Hopkins and they are reaching out directly to my doctor! This may be a big advantage for me to get a more accurate risk analysis than the less than optimal Decipher score on my less aggressive biopsy sample.