Gleason 8 diagnosis at 51: Likely opting for surgery

I am of course not bsnking on a downgrade, but it is an additional source of diceyness in the decision.

And there are several studies that look at doengrades and upgrades post-pathology. And with 4+4 they find 40-50% probability of a downgrade and something like 10% of an upgrade. On the other hand, lower grade cancers at biopsy have a higher chance of being upgraded.

Two things are at play here, I believe. Firstly, regression to mean: Any estimate that is to either extreme is likely to be an over or underestimate. Secondly, you use a different metric. The max of a small, untepresentative sample at biopsy and the median at pathology.

Biopsies will, of course, report the highest grade score. But, considering a needle in your walnut sized gland, even up to 20 times, still only represents a fraction of the tissue available then you are still dealing with a very small sample. The post-surgical pathology is far more accurate but shouldn't be lower than the cores from your biopsy.

But, you mention something that I also mentioned: "unless the pathology on the biopsy was inaccurate - which can happen". The pathologist is rarely the surgeon, so the surgeon might grade you differently but the pathologist is likely to be more accurate. But, even if all things are equal, it's completely possible for two qualified persons (of whatever discipline) could grade the samples differently - it happens from time to time.

So, take your examples. You had 70% 4 + 3 and 10% 4 + 4 - let's say it's off and it's 70% 3 + 4 and 10% 4 + 3. While the severity of the cancer is less, your need for treatment isn't - either way there is a lot of unfavorable cancer in your prostate. I had just 5% 3 + 4, and would have been on active surveillance if not for the 0.68 Decipher. Since my post surgical path was >30% 3 + 4 it was the right thing for me to do.

Now if you were 3 + 3 and 3 + 4 and that was reduced to simply 3 + 3 then that's a whole different ballgame since 6 is not even considered cancer by many urologists.

I think the point I am making is that we all want to grasp at whatever bit of good news we can, and questioning the pathology of the biopsy is an easy one because it's known that two people can have different opinions, but in some cases it doesn't make a lot of difference. In any case, you have to be your own advocate and if you believe the results to be inaccurate then seek more consults and new pathologies and be absolutely positive. There's a flip side to all of this, if we want to believe the second pathologist's lower rating and then use that data to not seek treatment and that person is wrong then it's game over. In the end, we choose to determine which person is correct, right or wrong.

You pointed to many important facts that I myself discovered in past week of frantic research and self-education about PC. Yes - more and more younger people are diagnosed with PC and unfortunately in later stages because nobody is testing them for PC. That means that it is not the result of more testing but of NO testing at earlier age. If the number of cases rose and was discovered at the same stage of cancer and in the same age cohort comparing to 20 years ago than it could be attributed to more awareness and more testing. But it is not the case. It seams that man get this cancer now at earlier age and by the time they are diagnosed it is higher grade.
I also found out reading research articles and case descriptions that only after prostate is removed and examined in detail outside of the body one can know what exactly is level of pathological changes in the tissue and that it very, very often shows more advanced disease than what biopsy shows. My husband and I agreed when he was 3+3 that if it ever goes even just to 3+4 that the damn thing would be removed. He might not be young man in numerical age but he looks and behaves like much younger person and his parents lived to 90 so I do not even understand why is treatment adjusted by "age" group ? I of course understand that some older man might have other limitations and /or different preferences or are with other conditions that can make surgery too aggressive as approach but the more I read the more I can see how surgery gives a lot of advantage if done early since than radiation is still an option if needed later on, where it is not possible other way around. Yes , there are side effects, but hey, for us personally there is no worse "side effect" than risking not knowing what is brewing in that gland or around it. Unfortunately because of laxed surveillance in our case we might not have other option than radiation. We shall see. Choice of treatment plan is of course very individual and very personal decision that involves a lot of thought and consideration and it is important to have all of the facts and than do what feels the best. Good news is that it seems both approaches give very, very good results.
PS: as far as I found so far PC advocacy groups now suggest starting testing at 40 to get "baseline " result of PSA , to see what is normal level for each individual. As a side-note, my husband lost 50 year old friend to PC 4 years ago. He was never tested because he "was not 50" and at 50 his PC was so advanced that he died in span of a 4 weeks . He had NO symptoms of any illness till tumors reached his lungs.

I do not understand doctors - I really don't. PSA test is like 60 bucks ???? Even if not covered by insurance they should suggest it to their patients so patients have an option to do it themselves. How is it possible that we here as lay persons know about benefits of early PSA tests and they can suggest otherwise ? And on top of that having patient like "topf" with family history and not testing - I am flabbergasted.

I believe this is the ongoing evolution of prostate cancer diagnosis and treatment. If we wait three more years then whole new things will exist - maybe TULSA will be the new normal, maybe PSE tests will completely replace PSA tests. But we can't hold on to maybe's, we just focus on the methods today and in today's early detection it's PSA's at 50+.

I can tell you that three days prior to my PSA results that my urologist ordered, he did a digital (rectal) exam and said straight up "I feel no abnormalities other than you have a small prostate", then recall that it wasn't that long ago that a digital exam was the de-facto method to detect prostate cancer and if it still was then I'd be done for.

I think about Dennis Hopper, who died from metastatic prostate cancer in 2010. He likely missed his chance for early detection due to digital exams. Fast forward to 2025 and he would have had a PSA, PSE, biopsy, MRI, CT and more and might still be around. Further in the future, say 2030, it might be detectable in a urine sample and be 100% accurate. In 2035 it might be a simple pill prevents or fixes it.

We have what we have, and maybe the rules will change now that more < 50 folks are testing positive for PC.

You pointed to many important facts that I myself discovered in past week of frantic research and self-education about PC. Yes - more and more younger people are diagnosed with PC and unfortunately in later stages because nobody is testing them for PC. That means that it is not the result of more testing but of NO testing at earlier age. If the number of cases rose and was discovered at the same stage of cancer and in the same age cohort comparing to 20 years ago than it could be attributed to more awareness and more testing. But it is not the case. It seams that man get this cancer now at earlier age and by the time they are diagnosed it is higher grade.
I also found out reading research articles and case descriptions that only after prostate is removed and examined in detail outside of the body one can know what exactly is level of pathological changes in the tissue and that it very, very often shows more advanced disease than what biopsy shows. My husband and I agreed when he was 3+3 that if it ever goes even just to 3+4 that the damn thing would be removed. He might not be young man in numerical age but he looks and behaves like much younger person and his parents lived to 90 so I do not even understand why is treatment adjusted by "age" group ? I of course understand that some older man might have other limitations and /or different preferences or are with other conditions that can make surgery too aggressive as approach but the more I read the more I can see how surgery gives a lot of advantage if done early since than radiation is still an option if needed later on, where it is not possible other way around. Yes , there are side effects, but hey, for us personally there is no worse "side effect" than risking not knowing what is brewing in that gland or around it. Unfortunately because of laxed surveillance in our case we might not have other option than radiation. We shall see. Choice of treatment plan is of course very individual and very personal decision that involves a lot of thought and consideration and it is important to have all of the facts and than do what feels the best. Good news is that it seems both approaches give very, very good results.
PS: as far as I found so far PC advocacy groups now suggest starting testing at 40 to get "baseline " result of PSA , to see what is normal level for each individual. As a side-note, my husband lost 50 year old friend to PC 4 years ago. He was never tested because he "was not 50" and at 50 his PC was so advanced that he died in span of a 4 weeks . He had NO symptoms of any illness till tumors reached his lungs.

I do not understand doctors - I really don't. PSA test is like 60 bucks ???? Even if not covered by insurance they should suggest it to their patients so patients have an option to do it themselves. How is it possible that we here as lay persons know about benefits of early PSA tests and they can suggest otherwise ? And on top of that having patient like "topf" with family history and not testing - I am flabbergasted.

I thought that the biopsy always reports the highest grade core, wheras the Gleason at pathology looks atvthe entire prostate and weights the different types present. So, if at least 5-10% pattern 3 in the total, the Gleason would become 4+3. But maybe there is domething that I did not understand. A second opinion surgeon actually told me that for him my biopsy is not 4+4.

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.

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.

@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.