← Return to Gleason 8 diagnosis at 51: Likely opting for surgery

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@psychometric:interesting that your surgeons were more balanced. All three I talked to were very adamant that I should do surgery- despite Gleason 8.

@survivor5280: Uoy say you were upgraded at pathology? Given my distribution of Gleason patterns, I wonder if I could be downgraded. And I clearly should have been diagnozed years ago, being even younger. I have a family history but three different PCPs yold me not to bother with screening in my 40s….

@jeffmarc: My overread of the Biopsy sludes noted PNI in the large volume Gleason 6 core, but not the original report. None of the other bad stuff was mentioned.

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Replies to "@psychometric:interesting that your surgeons were more balanced. All three I talked to were very adamant that..."

The general recommendation is regular screening from 50+ but, clearly, that should be adjusted to 40+, based on how many 40's guys are showing up here lately.

As for being downgraded, it's unlikely, unless the pathology on the biopsy was inaccurate - which can happen. Your biopsy is only a sample and typically represents the best possible case, when they remove the prostate then the entire tale is told.

My 3 + 4 was one core and only 5% on my biopsy. After surgery, 3 + 4 was 30%.

There's just no reasonable way to know the entire story until the prostate is out, a biopsy is almost always going to be best-case-scenario, not worst.

The low decipher score you have indicates that the cancer that was biopsied is not as likely to be aggressive, but what if 1mm away was a 4 + 5 and 0.70 but wasn't biopsied? The Decipher is meant to help fill in the gaps of a biopsy by indicating if it might actually be worse, your low risk doesn't necessarily mean it's likely to be better, just not likely to be worse.

You have so many 3 + 4 and 4 + 4 that I find it nearly impossible that you would be downgraded, but even if you were then you'd still be in concerning territory since your downgrade might be 3 + 4 and 4 + 3 - that 4 + 3 is still serious enough to warrant treatment, especially at the percentages you reported.

Also, I have learned to be my own advocate and that my PCP is not to be relied upon for every aspect of my health. My PCP should have detected that over two years my PSA increased and was near 4 a couple years ago, surpassed 4 a year ago but they did not mention that. I didn't really even register it until I pulled all my blood tests for the past 10 years and can see the steady rise in my PSA over them. It's on my list of things to talk to my PCP about when I see them again, because I feel they dropped the ball. I came out relatively unscathed, but still have that 0.68 Decipher and their miss let it get to 3 + 4 and Stage 3b, maybe I could have addressed it a bit earlier and had a better long term outcome than only 64% chance of non recurrence in 10 years that I have now.