Decipher score

Posted by ginger38314 @ginger38314, 1 day ago

Well my decipher score came in at .86 so with 2 3+4 cores 10% and 30%component of 4, I see Urology surgeon on 8/28 and will opt for surgery, also epe was 20-40 % and said unlikely seminal vessels were 0-20% and lymph nodes 0-20%. Just was hoping for a low score and no such luck.

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Profile picture for notpetecrowarmstrong @notpetecrowarmstrong

@ginger38314

My situation was nearly identical to yours: exact same .86 Decipher score and a low-volume 3+4 cancer in two cores. I opted for surgery largely because of my age (51 at the time): two radiation oncologists at two COEs both said they strongly recommended surgery over radiation given my youth and general health. I'm 14 months out from surgery and PSA remains undetectable, and functional recovery has been good, so I'm happy with my decision.

Of note, my post-surgical pathology found both large cribriform architecture and focal intraductal. Both of these are markers of aggressive cancer, and neither had been seen on needle biopsy. But the tumor volume and grading was the same as on biopsy, my margins were negative, there was no detectable escape from the prostate gland, and 5 lymph nodes were clear. Still, the high Decipher score and the cribriform/IDC-P had me uneasy.

You write "Everything thing seemed favorable with Gleason score and only a.8cm lesion
so very bummed out at this point". I felt similarly, so let me share something one doctor said to help me contextualize it: he said that "you had a very small amount of a very nasty cancer, but all indications are it was contained and your surgery was successful."

Everything other than your Decipher *is* favorable, and you're looking at favorable odds for successful treatment. Your cancer may be genomically aggressive but you seem to have caught it early enough where it's quite likely curable. Be grateful and put your trust in your care team to guide you through the process.

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I requested a pet scan just in case, my lesion size is only .8cm so I was
extremely discouraged of the results but that's what the decipher score is
for I hope I have the same positive outcome as you it's always said
prostate cancer is very treatable you just hope that treatment works best.

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Profile picture for surftohealth88 @surftohealth88

@ginger38314
So sorry to hear that : (((. It happened to my husband too. He had a single core 4+3 of more than 14 taken, and only 2 more with 3+3 . Decipher 1. (yes, the highest on the scale). Biopsy and MRI showed cancer "contained". PSMA showed no spread but one node was faintly glowing and far below what was considered "positive". Second expert confirmed that it was NOT positive but in reality it was. Post RP biopsy showed that that core was actually 4+5. At that time (just last year) all experts advised RP for high risk patients and than a new study came out recently which showed some advantage with having RT.

It is going to be tough choice and I am wishing you all the best and complete eradication of cancer with whatever treatment you choose 🍀.

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@surftohealth88 so how is you husband doing and which treatment did he decide on.

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One good thing the cancer center is #1 in Oregon hopefully the pet scan is clean but it wouldn't surprise me if it wasn't because originally I had a mri level 3 and had a exodos test and that came in high so everything so far has been the opposite of what I thought it would be.

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"hopefully the pet scan is clean but it wouldn't surprise me if it wasn't because originally I had a mri level 3 and had a exodos test and that came in high"

You're taking the right steps, @ginger38314 , so my best advice to you is to try to breathe and not catastrophize each piece of news. Your big picture is excellent and there are many men here who would trade seats with you in a heartbeat because of how favorable your prognosis is. Not everyone gets so lucky.

A PI-RADS 3 lesion is not in any way suggestive of advanced cancer or spread, nor is the ExoDX test. Your high Decipher is a risk factor but does not in itself indicate spread, and especially not with Grade Group 2. You say you have a single small lesion. That's good news. Try to be grateful for all the good factors and just take the rest one step at a time. It would be somewhat shocking if your PET scan shows spread given your low Gleason Grade and low PSA. Best of luck.

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Profile picture for notpetecrowarmstrong @notpetecrowarmstrong

"hopefully the pet scan is clean but it wouldn't surprise me if it wasn't because originally I had a mri level 3 and had a exodos test and that came in high"

You're taking the right steps, @ginger38314 , so my best advice to you is to try to breathe and not catastrophize each piece of news. Your big picture is excellent and there are many men here who would trade seats with you in a heartbeat because of how favorable your prognosis is. Not everyone gets so lucky.

A PI-RADS 3 lesion is not in any way suggestive of advanced cancer or spread, nor is the ExoDX test. Your high Decipher is a risk factor but does not in itself indicate spread, and especially not with Grade Group 2. You say you have a single small lesion. That's good news. Try to be grateful for all the good factors and just take the rest one step at a time. It would be somewhat shocking if your PET scan shows spread given your low Gleason Grade and low PSA. Best of luck.

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Thanks for the encouragement will see what happens.

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Profile picture for ginger38314 @ginger38314

@surftohealth88 so how is you husband doing and which treatment did he decide on.

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He was advised by both the surgeon and the RO to have RP and he had RARP last August. He recovered very fast and completely but he had BCR this spring (and wouldn't you know it in that same gland and 3 new ones on top) so now he is finishing RT. He is also now on ADT (Orgovyx and Nubeqa).

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Sounds like he's in good hands all the best to him, hopefully my pet scan is clean and my decision will be sbrt 5 treatments with 6 months orgovyx or ralp, will see what happens.

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We seem to be walking parallel paths thru this and discussed in prior posts. My recent Prolaris took the AS off the table when everything looked fairly “promising”.
Thanks to sites like this I fought for a Pet which is coming up and I suspect will really narrow down what road to choose.
Best of luck to you

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Profile picture for ireland1964 @ireland1964

We seem to be walking parallel paths thru this and discussed in prior posts. My recent Prolaris took the AS off the table when everything looked fairly “promising”.
Thanks to sites like this I fought for a Pet which is coming up and I suspect will really narrow down what road to choose.
Best of luck to you

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Thanks same to you. I will keep you informed after the test.

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Profile picture for ginger38314 @ginger38314

Everything thing seemed favorable with Gleason score and only a.8cm lesion
so very bummed out at this point ordered a pet scan and hopefully that's in
the clear, my oncologist said they could treat it with adt and 5 sbrt
treatments so not sure what is best.

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@ginger38314 Is your Oncologist a top tier GU Medical Oncologist, not a regular Medical Oncologist? It’s a lesson that I wished I had learned about earlier.

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