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

@jim18

I tend to agree based on the comment from the nurse that Veracyte probably didn't get it yet. The strange thing is that the nurse contacted me on 7/31 saying that Veracyte wanted my latest PSA information (which their office should already have considering it was done a few months prior to the biopsy).

Another poster indicated that they had direct contact in the past with Veracyte so I will try that route today.

@keithl56 That is true, they will not send you the results directly. But they might still be able to offer you insight into the status of those results and should confirm whether they've already sent to the doctor or not.

@notpetecrowarmstrong

I just sent a message to them to confirm the status of my test. I think someone may have dropped the ball somewhere in the process. Based on the time frame for getting results I definitely should have them be now, over 8 weeks since the biopsy.

@notpetecrowarmstrong

Thanks for the advice. I did as you suggested and received a prompt response from Veracyte. They advised that they had requested additional information from my doctor and they have not received a response. Testing hasn't even started. Needless to say I have contacted my doctor's office for an explanation. Not what I expected of Johns Hopkins.

@keithl56

The plot thickens. Apparently the 3+4 sample they sent did not have enough tissue for testing. My doctor had to approve sending a sample from the 3+3 core. They said that they advised Veracyte of this on 8/24 so something fell through the cracks. They are contacting Veracyte today and will send a sample of the 3+3.

I questioned them if doesn't really invalidate the whole purpose of the test. If they aren't testing the more aggressive cancer cells then the Decipher score will not reflect the actual situation. If I make a treatment decision based on a Decipher score that is lower than what it would have been with 3+4 sample I am rolling the dice.

What a mess. Now I face having to make a treatment plan that might be more aggressive than warranted.

Veracyte didn't have enough of my Gleason 7 to do Decipher testAfter waiting several weeks for my Decipher results today I found out that they did not receive a large enough sample of my Gleason 7 to test. There is not enough tissue to send a second sample. My doctor is going to send a sample of Gleason 6 to test.Doesn't this completely invalidate the test results? If the sample does not include the more aggressive cells the Decipher scale will be skewed downward and not be reflective of my actual cancer. With other factors being relatively favorable I would have been comfortable doing AS with a low Decipher score. Now I feel like I'll be rolling the dice if I do AS based on a bogus score.I hate the fact that I may now have to take a more aggressive treatment approach since I do not think that it is sensible to rely on the Gleason 6 score.I expected better from Johns Hopkins.Thoughts?

That's unfortunate but I read that happens sometimes, I don't understand why they would want a Gleason 6 doesn't make much sense, still waiting for my score it's been about 3 1/2 weeks, best of luck.

Thanks. The only value in doing the 6 is if it turns out high, then its treatment for sure. A low score is meaningless (and the nurse said that 6's are rarely high) since the pattern 4 isn't evaluated, which is more determinate as to the risk. I was hoping for a low score on the Gleason 7 since I think I could have tried AS for a while. Now it's a crap shoot.

@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

Thank you very much for the input. You brought up things that I was unaware of and will definitely incorporate into my discussions with my doctor. His office called me today and I think that they are expediting the Gleason 6 sample analysis but agree with your comments regarding how useful the results are. As if men in our situation need any additional stress!