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 do not understand the Uro's reasoning. Even though it is Mayo, I would seek out another urologist there, or at another facility.

Stay Strong Brother.

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My oncologist suggested that the Decipher test is primarily a way to avoid overtreating early-stage prostate cancer — it increases confidence that it's safe not to take more-aggressive measures (or alternatively, increases confidence that they're actually necessary).

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In October 2023, after my initial biopsy, I had to ask…my urologist did not volunteer…about genomic testing.

At that time I mentioned several genomic tests; but my urologist preferred the Decipher test.

My very first MRI targeted fusion biopsy showed a clinical diagnosis of GG2 (favorable intermediate risk), so tissue from that biopsy was submitted for Decipher testing.

Studies have been done regarding the value of a Decipher biopsy test, here’s one to show your urologist (there are others):
https://pmc.ncbi.nlm.nih.gov/articles/PMC8770695/
The conclusion of this study:

“In men with newly diagnosed prostate cancer, Decipher Biopsy score is independently associated with time on AS and time to treatment failure after radical therapy (i.e. radical prostatectomy or radiotherapy). The ongoing G-MAJOR clinical trial (NCT04396808) is assessing the use of molecular classifier testing in a prospective randomized trial in favorable risk prostate cancer to further establish the clinical utility of these tests.”

My 0.22 (low risk) Decipher score and Clinical-Genomic Risk Model (Decipher GRID) assessment that I was a viable candidate for AS was an important component in my personal decision making analysis and IMHO well worth pursuing.

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@toolbelt

I do not understand the Uro's reasoning. Even though it is Mayo, I would seek out another urologist there, or at another facility.

Stay Strong Brother.

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I'm thinking the same thing about this urologist.

When I met with him before the biopsy he told me that I would have to have someone there with me when he did the biopsy, which is a problem because I do not have anyone to travel with me. When I told him that he said "no problem, we can just do it in my office". I know biopsy's used to be done that way, and probably still are in some places, but I am not having a biopsy without anesthesia. Could he even do an MRI guided biopsy in his office?

Fortunately his intern came back into the room and said I could come alone if I stayed in the Care Hotel on their campus, so that's what I did.

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@hoover58
Your post: "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 have been a patient of Mayo Jacksonville since 2006. This does not sound like Mayo at all. Decipher is NOT just for those who had prostatectomy. In fact most of the time Decipher test are done prior to a treatment being recommended. It gives a better determination of the aggressiveness of your cancer.

I have heart failure and my Mayo uroloigst wanted to do the biopsies in his office transrectal because of my heart failure. I had had many surgeries and procedures at Mayo under anethesia. did not agree and wanted it done with anesthesia and transperenial.

I had my heart failure doctor get involved and he informed urologist that my heart failure should not be an issue. Heck once a year I do a pulmonary stress test and have done 50 Sprint Triathlons. Urolgoist said okay I talked to your HF doctor and I will do under anesthesia and transperenial.

When I got my diagnosis of prostate cancer my Mayo urologist referred me to Mayo R/O. It is Mayo R/O that recommended the Dechipher test along with bone scan. What I have learned in my 77 years of life if you are not comfortable with a health care provider then change.

Mayo Jacksonville has a patient advocacy that you can use to help with your disagreement and will contact the doctors on your behalf. And yes even though I love Mayo Jacksonville I have used patient advocacy.

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@hoover58

I'm thinking the same thing about this urologist.

When I met with him before the biopsy he told me that I would have to have someone there with me when he did the biopsy, which is a problem because I do not have anyone to travel with me. When I told him that he said "no problem, we can just do it in my office". I know biopsy's used to be done that way, and probably still are in some places, but I am not having a biopsy without anesthesia. Could he even do an MRI guided biopsy in his office?

Fortunately his intern came back into the room and said I could come alone if I stayed in the Care Hotel on their campus, so that's what I did.

Jump to this post

" Could he even do an MRI guided biopsy in his office?"

Mine was done this way in 2021. Not enjoyable, but, only a few minutes. (although it seemed like a long time....LOL)

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@jc76

@hoover58
Your post: "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 have been a patient of Mayo Jacksonville since 2006. This does not sound like Mayo at all. Decipher is NOT just for those who had prostatectomy. In fact most of the time Decipher test are done prior to a treatment being recommended. It gives a better determination of the aggressiveness of your cancer.

I have heart failure and my Mayo uroloigst wanted to do the biopsies in his office transrectal because of my heart failure. I had had many surgeries and procedures at Mayo under anethesia. did not agree and wanted it done with anesthesia and transperenial.

I had my heart failure doctor get involved and he informed urologist that my heart failure should not be an issue. Heck once a year I do a pulmonary stress test and have done 50 Sprint Triathlons. Urolgoist said okay I talked to your HF doctor and I will do under anesthesia and transperenial.

When I got my diagnosis of prostate cancer my Mayo urologist referred me to Mayo R/O. It is Mayo R/O that recommended the Dechipher test along with bone scan. What I have learned in my 77 years of life if you are not comfortable with a health care provider then change.

Mayo Jacksonville has a patient advocacy that you can use to help with your disagreement and will contact the doctors on your behalf. And yes even though I love Mayo Jacksonville I have used patient advocacy.

Jump to this post

thanks for the message @jc76. I just sent my radiation oncologist a message and asked him to order the test for me. I met with him earlier this year and I liked him a lot. I have sent 3 messages to the urologist over the past month but haven't gotten a response. We have a video meeting next week so I guess he is waiting until then to respond.

I'm trying very hard to not get labeled a "difficult patient" That has happened to me in the past and it never ends well for me. This is my forth urologist since Feb 2023.

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@handera

In October 2023, after my initial biopsy, I had to ask…my urologist did not volunteer…about genomic testing.

At that time I mentioned several genomic tests; but my urologist preferred the Decipher test.

My very first MRI targeted fusion biopsy showed a clinical diagnosis of GG2 (favorable intermediate risk), so tissue from that biopsy was submitted for Decipher testing.

Studies have been done regarding the value of a Decipher biopsy test, here’s one to show your urologist (there are others):
https://pmc.ncbi.nlm.nih.gov/articles/PMC8770695/
The conclusion of this study:

“In men with newly diagnosed prostate cancer, Decipher Biopsy score is independently associated with time on AS and time to treatment failure after radical therapy (i.e. radical prostatectomy or radiotherapy). The ongoing G-MAJOR clinical trial (NCT04396808) is assessing the use of molecular classifier testing in a prospective randomized trial in favorable risk prostate cancer to further establish the clinical utility of these tests.”

My 0.22 (low risk) Decipher score and Clinical-Genomic Risk Model (Decipher GRID) assessment that I was a viable candidate for AS was an important component in my personal decision making analysis and IMHO well worth pursuing.

Jump to this post

What is AS?

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In reply to @tango32652 "What is AS?" + (show)
@tango32652

What is AS?

Jump to this post

When I was diagnosed, my urologist and RO both suggested a Decipher test to help formulate a treatment plan, which eventually led to ADT and SBRT radiation. I'd strongly suggest pushing the issue, or request a second opinion.

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Interestingly, Mayo is credited and responsible for developing the Decipher test. Self advocacy is so important when it comes to this disease. We are the customers. The doctors are the service providers. Many forget this relationship. Fortunately for me my urologist, after doing an MRI fusion biopsy on me asked my permission to do the Decipher Test. I gladly said yes. Don't let them take your voice away from you.

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