Decipher for Subsequent Biopsies

Posted by TommyG @tdgillett, Feb 4 7:13pm

I'm scheduled for my second annual biopsy next week. I had the first one Decipher-scored. Should I get Deciphered for this one as well? Is a Decipher score likely to change (possible to change)?

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Yes, it can change over time. The more mutations there are in a sample, the higher Decipher score gets. Mutations accumulate over time so if I were you, I would ask for Decipher again.

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Great question. I will also have a 2nd biopsy this year to better confirm Gleason rating.

I have been asking myself this same question. Not sure if insurance will cover the cost of the 2nd Decipher test.

I will follow all the responses and comments.

Best wishes on your journey

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@tdgillett
What was your original PSA? What was your original Gleason score. What risk level did your original Decipher come back as? Why are your doctors doing a second biopsy?

Are you on A.S.? If you are on A.S. I can see why you are having another biopsy.

I did not have A.S. But I also did 3 different opinions before deciding on my treatment plan. None of the recommended A.S. Thus I only had one Decipher prior to my treatment radiation plan. That Decipher test changed my treatment plan from radiation and hormone to radiation only. So you can see I am very pro Decipher testing.

Decipher is very patient friendly. If your insurance will not cover they will discount the costs and can set up a payment plan for you. A great company and a great diagnostic test to help with you and your doctors decisions on treatments.

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Profile picture for jc76 @jc76

@tdgillett
What was your original PSA? What was your original Gleason score. What risk level did your original Decipher come back as? Why are your doctors doing a second biopsy?

Are you on A.S.? If you are on A.S. I can see why you are having another biopsy.

I did not have A.S. But I also did 3 different opinions before deciding on my treatment plan. None of the recommended A.S. Thus I only had one Decipher prior to my treatment radiation plan. That Decipher test changed my treatment plan from radiation and hormone to radiation only. So you can see I am very pro Decipher testing.

Decipher is very patient friendly. If your insurance will not cover they will discount the costs and can set up a payment plan for you. A great company and a great diagnostic test to help with you and your doctors decisions on treatments.

Jump to this post

@jc76 Yes, I'm on AS. original Gleason 3+3 and 3+4 in 2 stabs out of 23. PSA 7.76 but my prostate is really large.

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Profile picture for charlesprestridge @charlesprestridge

Great question. I will also have a 2nd biopsy this year to better confirm Gleason rating.

I have been asking myself this same question. Not sure if insurance will cover the cost of the 2nd Decipher test.

I will follow all the responses and comments.

Best wishes on your journey

Jump to this post

@charlesprestridge Even if insurance balks, I'd be inclined to do it again as long as the cost isn't prohibitive. New samples=new decipher score?

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My insurance was billed for something like $5000 for my Decipher test. I don't know what the insurance actually paid. But it isn't like the $50 or so PSA test.

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Profile picture for TommyG @tdgillett

@charlesprestridge Even if insurance balks, I'd be inclined to do it again as long as the cost isn't prohibitive. New samples=new decipher score?

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@tdgillett

Thank you. Insurance has approved the 2nd MRI and biopsy. Will do them in April.

My situation is my PSA is low, initial biopsy was a 3+3 in 5 cores, a 2cm Pirads5 lesion, the lesion is hugging the prostate wall, PSMA pet only showed the one lesion, and decipher was 0.48.

My PSA on visit this week was down to 2.0. My high last year was only 4.0. Tests over the past 4 years have been between 2.5 and 2.9.

Initial biopsy and PSA indicate stay on AS. Pirads5 and reducing risk of ECE leans toward thinking about treatment. Decipher is in the middle.

My wife and have been blessed and have worked hard to save money. I have no issue paying out of pocket for a 2nd decipher if it makes sense.

Thanks for sharing your information.

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Hello...so, correct me if I am wrong, but it is logical to assume that your urologist put you on Active Surveillance (AS) after your first biopsy, which tells me that perhaps your first biopsy yielded a Gleason Score of 3 + 3 = 6? Unless it was your personal decision to do AS after a biopsy yielded the 3 + 3 = 6 or more (3 + 4 = 7?, 4 + 3 = 7?), I would wonder why your physician did not recommend the radical prostatectomy (RP) if you were more than a Gleason "6"? You did not offer your first PSA value, but it must have been high enough to prompt the first biopsy and first Decipher Test Score (what were they?). You did not offer what your most recent PSA is either.

My personal advice, based on "my" experience, is if you are a Gleason 3 + 4 = 7 or higher, then have a serious talk with your urologist about having the RP. I am the not-so-rare, perfect example of what I speak about often here: My urologist was all happy that I was a low-moderate risk Gleason 3 + 4 = 7 ("we caught it early"). He thankfully still wanted to do the RP - and did - because he does not believe in AS. He was humbled and I was crestfallen, when my surgical pathology report came back with LOTS of unexpected, more aggressive disease characteristics: Extraprostatic Extension (EPE) where the tumor broke through and out of the membranous capsule that surrounds the prostate; Surgical Margins which means that despite removing all of the prostate, the two seminal vesicles, and two vas deferens, there were cancer cells left in me that extended beyond the prostate; Cribriform glands tissue (thin layer of prostate tissue stained on a microscope slide gives the appearance of "Swiss cheese" with holes in the tissue - an ominous sign), and worst of all: spread into my left seminal vesicle without tumor or nodules noted...just cells. This was all on my Gleason Score that was "barely" that 3 + 4 = 7. I only had 6-10% of "4" level cells, so I was just over the hump from not being a 3 + 3 = 6, yet the Gleason could have easily disarmed my physician, especially with just 6-10% of the cells being "4"..

I have now called this the "tip of the iceberg" in all of my many posts. The Gleason Score is just the "tip of the iceberg" that tells you nothing except if you do, or do not, have cancer and rates the cancer based on the enumerated/scored number of "3", "4", or "5" cells you might have. The Gleason Score says nothing about the anatomical features of the prostate and tumor, its aggressiveness/spread, and location of the spread if it did in fact bust out of the prostate membrane to adjacent areas. And once that happens, it is "all bets off" - EPE is the breaking point. If the tumor spread outside of the prostate membrane (EPE), you have no idea how far and for how long. They only know in part, because it is routine to remove the seminal vesicles and vas deferens because they are no longer needed. But it doesn't say if the cancer spread to your bladder neck, lymph nodes, etc. So, I would have a long and detailed talk about your first vs the second Decipher Test score, but more important than that is whether your Gleason Score advanced to a higher Score, even if it went from a 3 + 4 = 7 to a 4 = 3 = 7, that is not good. Good luck and keep us all posted.

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Profile picture for TommyG @tdgillett

@jc76 Yes, I'm on AS. original Gleason 3+3 and 3+4 in 2 stabs out of 23. PSA 7.76 but my prostate is really large.

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@tdgillett
The enlarged prostate could signal BPH for the high PSA. But 7.76 if pretty high. The number given to m by urologist and PCP for normal level of PSA would be below 4. But again a high PSA does not mean cancer and a low does not mean you don't have it. My PSA at time of diagnosis was 3.75. But your 3+4=7 indicates you do have PC.

What did your Decipher come back at? For me A.S. is like gambling. It is okay for some and some not okay as taking a chance. But that is left up to the individual and his doctors to make. If possible I would get the Decipher again (if me) with the 3+4=7 Gleason on your original biopsies.

Decipher will work with you on costs and payments if your insurance does not cover.
Good luck!!

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Profile picture for rlpostrp @rlpostrp

Hello...so, correct me if I am wrong, but it is logical to assume that your urologist put you on Active Surveillance (AS) after your first biopsy, which tells me that perhaps your first biopsy yielded a Gleason Score of 3 + 3 = 6? Unless it was your personal decision to do AS after a biopsy yielded the 3 + 3 = 6 or more (3 + 4 = 7?, 4 + 3 = 7?), I would wonder why your physician did not recommend the radical prostatectomy (RP) if you were more than a Gleason "6"? You did not offer your first PSA value, but it must have been high enough to prompt the first biopsy and first Decipher Test Score (what were they?). You did not offer what your most recent PSA is either.

My personal advice, based on "my" experience, is if you are a Gleason 3 + 4 = 7 or higher, then have a serious talk with your urologist about having the RP. I am the not-so-rare, perfect example of what I speak about often here: My urologist was all happy that I was a low-moderate risk Gleason 3 + 4 = 7 ("we caught it early"). He thankfully still wanted to do the RP - and did - because he does not believe in AS. He was humbled and I was crestfallen, when my surgical pathology report came back with LOTS of unexpected, more aggressive disease characteristics: Extraprostatic Extension (EPE) where the tumor broke through and out of the membranous capsule that surrounds the prostate; Surgical Margins which means that despite removing all of the prostate, the two seminal vesicles, and two vas deferens, there were cancer cells left in me that extended beyond the prostate; Cribriform glands tissue (thin layer of prostate tissue stained on a microscope slide gives the appearance of "Swiss cheese" with holes in the tissue - an ominous sign), and worst of all: spread into my left seminal vesicle without tumor or nodules noted...just cells. This was all on my Gleason Score that was "barely" that 3 + 4 = 7. I only had 6-10% of "4" level cells, so I was just over the hump from not being a 3 + 3 = 6, yet the Gleason could have easily disarmed my physician, especially with just 6-10% of the cells being "4"..

I have now called this the "tip of the iceberg" in all of my many posts. The Gleason Score is just the "tip of the iceberg" that tells you nothing except if you do, or do not, have cancer and rates the cancer based on the enumerated/scored number of "3", "4", or "5" cells you might have. The Gleason Score says nothing about the anatomical features of the prostate and tumor, its aggressiveness/spread, and location of the spread if it did in fact bust out of the prostate membrane to adjacent areas. And once that happens, it is "all bets off" - EPE is the breaking point. If the tumor spread outside of the prostate membrane (EPE), you have no idea how far and for how long. They only know in part, because it is routine to remove the seminal vesicles and vas deferens because they are no longer needed. But it doesn't say if the cancer spread to your bladder neck, lymph nodes, etc. So, I would have a long and detailed talk about your first vs the second Decipher Test score, but more important than that is whether your Gleason Score advanced to a higher Score, even if it went from a 3 + 4 = 7 to a 4 = 3 = 7, that is not good. Good luck and keep us all posted.

Jump to this post

@rlpostrp Thanks for your response. More information about my situation is in my profile. I'm about to turn 80 and first MRI+biopsy strongly indicated AS for me. Second biopsy in two weeks. Yes, my large prostate has yielded BPH issues and probably higher/normal PSA values. First Decipher was borderline .49, so we'll check that again this time around. My Gleasons 3+3 and 3+4 were both< 5%. For the record, my urologist didn't "put me on AS." I consulted with him and with a RO before I made that decision.

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