Decipher Results and Outcomes: Anyone had similar?

Posted by namrac @namrac, Jan 3 7:05pm

I am curious if others have had similar results on their decipher test and outcome. I have added my results and up to date information.

I was diagnosed with a PSA level of 5.5 two years ago. Eight months earlier, it was 2.5. I wasn't feeling well, so I had a complete battery of tests, all of which came back negative. My doctor suggested running a PSA test, which I agreed to, and thus began my journey.

I had a prostatectomy on January 16, 2023. Four lymph nodes and the left seminal vesicles were positive and removed, along with a total of 19 lymph nodes but there was no distant spread Stage 4a. My PSA level was undetectable 8 weeks post-surgery and remained undetectable for the first 6 months. Then it started to rise slowly. When it reached 0.13. Off to the oncologist (who only does pc for 20 plus years) on April 9, 2024, and started Orgovyx.
Before starting radiation therapy, my PSA was undetectable again because of this drug I began radiation on April 23, 2024. After radiation my PSA was >.01 until October 2024 where it went to .02 which freaked me out a bit, not the oncologist.

I had my surgeons appointment in November and my PSA came back >.02 which I think is as low as his lab goes unlike the oncologist. I felt a bit better this time . I would love to head others experiences it helps.

Shared files

Decipher Redacted_Signed (Decipher-Redacted_Signed-3.pdf)

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

@clandeboye1

I have a question for this forum : " WHY IS A DECIPHER TEST IN THE USA CONSIDERED BY MOST AS - THE GOLD STANDARD " ? It is rarely used worldwide , almost never in Canada .
I have also read they tend to over analyize on the high side , BYA type of testing .
Constructive comments will be very much appreciated

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Having been diagnosed via fusion biopsy at a center of excellence with what appeared to be low volume low risk Gleason 3+3 prostate cancer a few months ago, I was blindsided by a “high risk” Decipher result. So have been doing a lot of reading on Decipher. Although I’ve not heard it referred to as the “gold standard”, it does appear that many professionals use it as one of several tools to diagnose prostate cancer and determine treatment both pre and post op. I have likewise seen a number of posts on this site where individuals have altered their treatment plans, from more aggressive to less and vice versa, based on their Decipher results. Suffice to say that my high risk Decipher score has certainly made my decision process more complicated and exhaustive but perhaps that’s not a bad thing at the end of the day.

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@clandeboye1

@jc76 Thanks for your detailed rresponse . At age 85 ( soon ) I want to stay clear of ADT at all costs .
Accordingly I am investigating Monotherapy SBRT -- 5 Treatments if possible .
MY ALTERNATE PLAN IS EITHER NanoKnife or TULSA PRO .

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@clandeboye1
Bottom line you have to do what is best for you and what you want not what others do.

It is your body and your cancer. I emphasize with you I did not want to be on hormone treatments as was the standard treatment given to me with my diagnosis. The Decipher test was offered and I'm glad I took it. It changed my risk level to low from my originally intermediate risk diagnosis from my biopsies.

Sound like you have the ability to have the options of several different treatments. Many I have no experience or knowledge of.
I wish you luck in your journey.

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@hirejohn

Having been diagnosed via fusion biopsy at a center of excellence with what appeared to be low volume low risk Gleason 3+3 prostate cancer a few months ago, I was blindsided by a “high risk” Decipher result. So have been doing a lot of reading on Decipher. Although I’ve not heard it referred to as the “gold standard”, it does appear that many professionals use it as one of several tools to diagnose prostate cancer and determine treatment both pre and post op. I have likewise seen a number of posts on this site where individuals have altered their treatment plans, from more aggressive to less and vice versa, based on their Decipher results. Suffice to say that my high risk Decipher score has certainly made my decision process more complicated and exhaustive but perhaps that’s not a bad thing at the end of the day.

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Have you read my threads on 2nd & 3rd Opinions of your Biopsy result Gleason 3 + 3 = 6
My 1st Transperineal MRI Fusion Biopsy was negative . My MRI was PI Rads 5 .
My 2nd Biopsy was Gleason 3 + 3 + 6 . A 2nd opinion was changed to ALL Gleason 3 + 4 = 7 in all the six target cores . A 3rd opinion changed again to Four Cores Gleason 3 + 3 = 6 and the remaining two cores Glleason 3 + 4 = 7
I suggest , as recommended in Dr. Patrick Walsh's Book " Guide to Surviving Prostate Cancer ", that you get a 2nd or 3rd opinion of your biopsy pathology results .
Finally . I personally would not make any major treatment decisions on a Decipher Score -- It
is only an additional marker BioMARKER !! . The real treatment options are determined by
your Biopsy plus Bone & CT Scans , or PSMA PET CT Scan .

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@clandeboye1

Have you read my threads on 2nd & 3rd Opinions of your Biopsy result Gleason 3 + 3 = 6
My 1st Transperineal MRI Fusion Biopsy was negative . My MRI was PI Rads 5 .
My 2nd Biopsy was Gleason 3 + 3 + 6 . A 2nd opinion was changed to ALL Gleason 3 + 4 = 7 in all the six target cores . A 3rd opinion changed again to Four Cores Gleason 3 + 3 = 6 and the remaining two cores Glleason 3 + 4 = 7
I suggest , as recommended in Dr. Patrick Walsh's Book " Guide to Surviving Prostate Cancer ", that you get a 2nd or 3rd opinion of your biopsy pathology results .
Finally . I personally would not make any major treatment decisions on a Decipher Score -- It
is only an additional marker BioMARKER !! . The real treatment options are determined by
your Biopsy plus Bone & CT Scans , or PSMA PET CT Scan .

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Thanks, clandeboy. I have read and appreciated your threads and am actually in the process of getting a second opinion on my biopsy results and lining up a PSMA scan. I also don’t plan on making any treatment decisions based solely on my high Decipher result but also feel that it must factored in as it is an additional marker which appears to be gaining recognition and credibility in the medical world.

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@hirejohn. A VERY SOUND AND THOUGHTFUL DECISION . GOOD LUCK .

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@hirejohn

Thanks, clandeboy. I have read and appreciated your threads and am actually in the process of getting a second opinion on my biopsy results and lining up a PSMA scan. I also don’t plan on making any treatment decisions based solely on my high Decipher result but also feel that it must factored in as it is an additional marker which appears to be gaining recognition and credibility in the medical world.

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I wouldn't stop with a second opinion. My first biopsy was 3+4 at Vanderbilt Medical Center, 4+3 at Johns Hopkins, and 4+4 at MD Anderson. Those were all from the same set of slides.

A gleason score is just someone's opinion, and it is very subjective.

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@hoover58

I wouldn't stop with a second opinion. My first biopsy was 3+4 at Vanderbilt Medical Center, 4+3 at Johns Hopkins, and 4+4 at MD Anderson. Those were all from the same set of slides.

A gleason score is just someone's opinion, and it is very subjective.

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I agree 100% I to had different opinions. I took the spread of my cancer as did my doctors as very aggressive and have pursued treatment accordingly.

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@hoover58

I wouldn't stop with a second opinion. My first biopsy was 3+4 at Vanderbilt Medical Center, 4+3 at Johns Hopkins, and 4+4 at MD Anderson. Those were all from the same set of slides.

A gleason score is just someone's opinion, and it is very subjective.

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@hoover58
Good information. That is the feedback I got that Gleason Score was subjective from the specialist looking at it. It really is looking at normal cells to abnormal ones and how much the differ.

It is why I always post consider Decipher test as more objective and genetic test.

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@hoover58

I wouldn't stop with a second opinion. My first biopsy was 3+4 at Vanderbilt Medical Center, 4+3 at Johns Hopkins, and 4+4 at MD Anderson. Those were all from the same set of slides.

A gleason score is just someone's opinion, and it is very subjective.

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So this tells me that there is little science in these scores unless the slides are so obviously abnormal. I had two biopsies with first being interpreted as 3+4 and then read at Hopkins giving them a 3+3. A second biopsy a year later was 3+3 verified using AI. I get a third biopsy on Monday afternoon. My decipher on the first biopsy came at .37 low risk.

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@imbimbo

So this tells me that there is little science in these scores unless the slides are so obviously abnormal. I had two biopsies with first being interpreted as 3+4 and then read at Hopkins giving them a 3+3. A second biopsy a year later was 3+3 verified using AI. I get a third biopsy on Monday afternoon. My decipher on the first biopsy came at .37 low risk.

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@imbimbo
I know you replied to @hoover58. But I wanted to give you my personal experience.

The expertise, experience, training, etc. of your urologist and pathologist has a great impact on accuracy of biopsies and Gleason scores. I would not discount the Gleason scores at all. Just know they are subjective to the expertise and experience of who is reading them.

The do give a diagnosis to work with. At that point you need to decide if want second or third opinions. Most of us suggest doing that. Then you will get more than one opinion on your diagnosis and treatment options. If they come back with same, good, if not then make decisions.
What I and a lot of others did and now suggest is at test like Decipher test which is a genetic test much more objective than the subjective Gleason Score.

It seems your Decipher test were very close to each other. Some pathologist are going to be more on doing a highest number probability than leaning toward a lower number probability.

I think your Decipher helped you with the low risk diagnosis. The is what happened to me also. Original Gleason was 3+4=7 (worse biopsy others 3+3=6) and intermediate risk. My decipher came back low risk. My R/O at Mayo urologist, Mayo R/O, R/O at UFHPTI, and Mayop PCP all agreed with Decipher results and the recommendation of radiation only treatment.

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