Decipher Test

Posted by hoover58 @hoover58, Nov 3 10:50am

I had my third biopsy in the past 18 months in September - this one at the Mayo Clinic in Jacksonville. I have asked for a Decipher Test each time, but so far no luck getting it. I am 66 years old, gleason 4+3 on the last biopsy. When I asked the urologist at Mayo for the test he told me that the test is for people who have had a prostatectomy. I know that is not true. I feel like he has already made up his mind what my treatment should be and does not want any information that might contradict him. Has anyone else had trouble getting a urologist to order the test? It seems like it should be automatic after a biopsy.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I finally received my Decipher test results - unfortunately my score is .92 - which ends my 2 years of AS.

I had to practically beg to get this test at Mayo Jacksonville, and it was never even mentioned by the seven other doctors I saw at other places. The urology department in Jacksonville just flat out wouldn't do it - I ended up getting it done by the radiology department.

My advice to everyone is insist on getting this test, even if it is not offered to you

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@hoover58

I finally received my Decipher test results - unfortunately my score is .92 - which ends my 2 years of AS.

I had to practically beg to get this test at Mayo Jacksonville, and it was never even mentioned by the seven other doctors I saw at other places. The urology department in Jacksonville just flat out wouldn't do it - I ended up getting it done by the radiology department.

My advice to everyone is insist on getting this test, even if it is not offered to you

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Good advice!

Don’t understand why any physician, involved in PCa, would not want to know the information provided in their patients Decipher Patient and Decipher GRID reports, so as to be more confident in their treatment recommendations.

Decipher’s database now extends to over 200,000 genomes and the information provided is independent of one’s Gleason score….meaning one’s biopsy and/or post RP pathology report is only part of the story IF personalized treatment is being sought.

This link provides an updated video explanation of the latest Biopsy and postRP versions of the Decipher Patient Report.
https://decipherbio.com/decipher-prostate/patients/biopsy-test-report/
The next link provides a video explaining the interpretation of the 7 page Decipher GRID report.
https://decipherbio.com/decipher-prostate/physicians/decipher-grid/
Sorry to hear of your relatively high Decipher score; however, it (coupled with the information in your personalized GRID report) can be used to tailor your treatment(s) to help maximize its(their) effectiveness towards a successful outcome, for your individual situation.

IMHO, if my doctor/team didn’t think the Decipher Reports would influence their treatment recommendation for my particular case; then I’d be aggressively looking for a new doctor/team.

IMHO that kind of “one size fits all” mentality is antiquated and reeks of “Medicine 2.0”.

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@handera

@hirejohn, Although you indicate you have a family history of prostate (and maybe especially so) you may want to consider getting a germline PCa genetic test, besides obtaining your Decipher Score.

You can get germline genetic testing for free by registering for the Promise study at the link below. Besides receiving the test results, you can speak with a genetic counselor who will explain them. https://www.prostatecancerpromise.org/about/

Also make sure you get a copy of your Decipher GRID report; which includes a lot of additional information (including a Clinical-Genomic Risk Model assessment), based on the PCa tumor cells taken from your biopsy.

Based on a mpMRI fusion biopsy, my 3+4=7 Gleason (with low volume pattern 4) was classified as "Low Risk" for metastasis, due to my 0.22 Decipher score. This along with the finding I had no genetic variants (mutations) for prostate cancer (based on my Promise study results) allowed me to confidently pursue active surveillance.

13 months after being diagnosed, and tripling my running program (upto ~35 miles/month) and losing 25 lbs, my 12 month follow-up mpMRI showed signs of lesion regression, as compared to my initial mpMRI and my post-biopsy PSA's have stabilized 20% below my pre-biopsy level.

I went to my urologist this morning and he indicates, based on all my data, I can delay another biopsy, since no sign of PCa progression is evident.

My vigorous exercise/modified diet approach has not been easy AND it's no guarantee to be successful for similarly diagnosed men; however, I like to share my story as an encouragement to those initially diagnosed with a similar situation as mine.

There is a viable alternative (I have not even discussed all the beneficial side-effects I've experienced) to immediate treatment, for men diagnosed with low risk PCa...but IMHO it requires implementation of a significant lifestyle change. Some men may not be able (or simply don't want) to adopt such changes...I understand...and to each their own.......

All the best with your results and decisions!

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Is the Decipher "GRID" report different than the "Patient Report" that I received from Veracyte Labs? If so, how does one go about getting the GRID report? Thanks much!

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Call decipher 1.888.792.1601. They will send the "grid" to you at your request.

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@hirejohn

Thanks for the input @c76. Although I have been to Mayo Rochester a number of times for a couple of serious issues, I'm currently working with a team at the Cleveland Clinic for my prostate cancer as my wife and I reside in Ohio. A bone scan was discussed but not ordered as of yet. Not familiar with UFHPTI so would appreciate hearing more. Also wondering about your Gleason score and the results of your Decipher.
Good luck to you as well.

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Cleveland Clinic is definitely in the TOP 3 or 5 in the U.S. You are in great hands!

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@hoover58

I finally received my Decipher test results - unfortunately my score is .92 - which ends my 2 years of AS.

I had to practically beg to get this test at Mayo Jacksonville, and it was never even mentioned by the seven other doctors I saw at other places. The urology department in Jacksonville just flat out wouldn't do it - I ended up getting it done by the radiology department.

My advice to everyone is insist on getting this test, even if it is not offered to you

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@hoover58
I will be careful with my words here but my experience with Mayo Jacksonville urology department was not positive. I ended up going through Patient Advocacy.

The urologist I saw was one of those that said, "you won't die of prostate cancer, it will be something else." You will also see another post I posted where the same urologist wanted to do my biopsies via rectal. And then said it has a 2% more chance of infection but "you would only have to spend a couple of days in hospital if you did get it."

I did not accept his way of doing it and challenged it and had my cardiologist get involved who advised absolutely no issues with me having anesthesia.

I advised my PCP (Mayo) if he needed to refer me again to a urologist, I did not want to see the same one.

Mayo radiology/oncology was the division that gave me the information on Decipher and offered it to me to make a more specific diagnosis of my cancer risk. My decipher score came back at low risk where my biopsies had come back as intermediate.

I have posted many many times that I strongly suggest getting additional tests like Decipher, PSMA, bone, etc. to help clarify and get more specific information on your cancer diagnosis. AND get a second opinion.

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I agree with you about the urology department. The week before I got my Decipher test results, I had a video meeting with the urologist, and he recommended I have Tulsa Pro Therapy. Since the radiologist ordered the Decipher Test I don't know if the urologist will see it. If he does I wonder if it would change his recommendation. He said he would ablate 1/3 of my prostate. He said Tulsa Pro is not FDA approved (wrong), that medicare will only partially pay for the procedure (I think wrong), that I would not be able to have surgery if the cancer returns (wrong), and that I would need to have an MRI every 6 months and a biopsy every year after Tulsa Pro (I think wrong).

I have not seen any discussion on how the decipher score impacts the decision to have Tulsa Pro, but it seems like leaving 2/3 of my prostate intact with a .9 decipher score is a bad idea.

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@jc76

@hoover58
I will be careful with my words here but my experience with Mayo Jacksonville urology department was not positive. I ended up going through Patient Advocacy.

The urologist I saw was one of those that said, "you won't die of prostate cancer, it will be something else." You will also see another post I posted where the same urologist wanted to do my biopsies via rectal. And then said it has a 2% more chance of infection but "you would only have to spend a couple of days in hospital if you did get it."

I did not accept his way of doing it and challenged it and had my cardiologist get involved who advised absolutely no issues with me having anesthesia.

I advised my PCP (Mayo) if he needed to refer me again to a urologist, I did not want to see the same one.

Mayo radiology/oncology was the division that gave me the information on Decipher and offered it to me to make a more specific diagnosis of my cancer risk. My decipher score came back at low risk where my biopsies had come back as intermediate.

I have posted many many times that I strongly suggest getting additional tests like Decipher, PSMA, bone, etc. to help clarify and get more specific information on your cancer diagnosis. AND get a second opinion.

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I think that's good advice. I'll post again what my radiation oncologist told me.

He said that Decipher is an important way to avoid overtreatment: instead of assuming a worst case by default, it makes oncologists more confident in recommending lighter treatment options or surveillance in some cases for early-stage cancer.

For advanced prostate cancer, however (as in my case), he said Decipher wouldn't add much value, because there's no point trying to figure out how likely it is to metastasise when we know it has already happened. It would be like having a system to predict the result of last year's Superbowl (my words, not his 🙂 ).

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Except that Decipher will give you somatic information. It tells you the genetic mutations of the tumor. It will tell which chemotherapeutic agents are effective against your select mutant genes.
In my case it was determined that the agents I was being prescribed were not effective against my tumors mutations. Somatic information corrected the tumor type mistake assumed by the oncologists. It also directed me to chemotherapies in clinical trial for my tumor type and mutation.

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@hoover58

I agree with you about the urology department. The week before I got my Decipher test results, I had a video meeting with the urologist, and he recommended I have Tulsa Pro Therapy. Since the radiologist ordered the Decipher Test I don't know if the urologist will see it. If he does I wonder if it would change his recommendation. He said he would ablate 1/3 of my prostate. He said Tulsa Pro is not FDA approved (wrong), that medicare will only partially pay for the procedure (I think wrong), that I would not be able to have surgery if the cancer returns (wrong), and that I would need to have an MRI every 6 months and a biopsy every year after Tulsa Pro (I think wrong).

I have not seen any discussion on how the decipher score impacts the decision to have Tulsa Pro, but it seems like leaving 2/3 of my prostate intact with a .9 decipher score is a bad idea.

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@hoover58
I did not have the procedure you are mentioning. But that is a lot of wrong that you are finding with your urologist.

When I got my prostate diagnosis and met with my Mayo R/O the treatment was photon 20 rounds with hormone treatment. I got the Decipher and it came back low risk versus the biopsy stating medium risk. So the need for hormone treatment was removed.

Another poster mentioned still getting it as it still can determine the aggressiveness of it. It is something to discuss with your urologist or whom ever is going to do your treaments.
Good luck!!!

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