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Gleason Surprise After Prostatectomy?

My big question about Active Surveillance is: “Could your Gleason score be higher than what is found after your biopsy?”

First of all, it cannot be lower. That biopsy was taken from your prostate, and the parts of the prostate the samples (cores) are taken from have that Gleason score. But only a small percentage of the prostate is taken out in a biopsy, which leaves a lot of the prostate untouched.

My Gleason score history

My history is I was diagnosed with a Gleason 8 after the biopsy in 2013, but when the pathologists had the full prostate and tumor (after prostatectomy), it was upgraded to a G9 (5 + 4). Ironically, when my urologist first told me I had a G8, I commented to him that thankfully I didn’t have a G9 or 10. To which he replied, “We do save a few of those”.

I’ve thought many times since then that when guys decide on Active Surveillance, could a G7 (3+4) really be a G8 (4+4), for example? When a G8 was my initial diagnosis, there was no doubt back then (2015) I had to have a prostatectomy.

Higher Gleason after a prostatectomy?

What I don’t know, and I’m curious about, is how many of you were told that you had a higher Gleason score after your prostatectomy?

I started writing this when I was on a flight from Atlantic City to Orlando, where I wanted to see the Prostate Support Group at The Villages. (If you’re not familiar with The Villages, it’s a humongous 55+ community. I live in a reasonably good sized one with 387 houses and about 650 residents in New Jersey. I was told The Villages has 59,000 units and about 120,000 residents.)

Before the main speaker gave his talk, people came to the main table where I was fortunate enough to be seated. One couple stopped by and the husband said he had his prostatectomy 12 days previous to that. He was the first and, until now, the only guy I had asked if his Gleason score had gone up after they had his whole prostate.

I have to say I was stunned as he told me his score went from a 7 (3+4) to a 9 (4+5).

Questions for the community

So this is really a two question article:

  1. How many of you had an increase in your Gleason score after a prostatectomy, and what was the increase from and to?
  2. For those who decided on active surveillance, would you be comfortable today if you knew Gleason 6 or 7 you had from the biopsy had the possibility of being an 8 or 9?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Will Jones moderator
    3 weeks ago

    I did not have a Gleason increase after my prostatectomy. Prior to surgery it was a 3+3, but because of a continuing increase in my PSA and a biopsy that showed cancer cells in 10 of 12 core samples, after one year of active surveillance I chose surgery. I no longer wanted to take the risk. My PSA has been below 0.01 since April 2018. More than one person has said that my treatment decision was premature, but only the person walking around with the diagnosis knows how it feels. Given my medical history, it was the right decision for me.

  • Len Smith moderator author
    3 weeks ago

    Will, when I was diagnosed with PCa in 2013, I had two friends who, just like you, had both been diagnosed with Gleason 6’s (3+3), 8 and 10 years before me. Both had radical prostatectomies, and to date zero problems with their PCa. That really made my decision to follow my urologist’s recommendation to have an RP very easy. Interestingly, one of the two was furious with me for not using his surgeon, to the point he hasn’t spoken to me since. (I did ask my urologist about that surgeon, and he said he’d seen inconsistent results from him.)

  • stevecaks
    3 weeks ago

    After my PSA kept rising steadily, my primary care doc scheduled a biopsy. Gleason score was 8 (?+?). Surgery was scheduled, but the prostate was adhered to the colon, which would have been significantly damaged had removal been attempted. Beam radiation and ADT followed.

    Since radiation ended in July, 2018, PSA has been undetectable and testosterone near zero, but sometimes I wonder how much higher my Gleason would have risen if the whole prostate had been tested. Kinda like digging through the fireplace ashes to see what kind of wood you burned!

  • KeithH
    5 months ago

    I was Gleason 9 after biopsy, and it did not change after prostatectomy.

  • Len Smith moderator author
    5 months ago

    Keith, thankfully it didn’t go up. But you had a Grade 5. (In my opinion, whether a Grade 5 is your primary or secondary PCa, the fact you had it is you (and I) had the worst of the worst, and not much room for it to increase.). But glad you had it taken out and the docs are on top of it, and I hope you never have a detectable PSA ever again. BTW, with a Gleason 9, are you a Vietnam vet?

  • Len Smith moderator author
    6 months ago

    Metchnikov, as I noted in the article, I had a 4 + 4 pre-surgery, and there was no question in my mind to get my prostate and the cancer out of me. I assume you feel the same way–glad to see it gone. All the best, and may you never see a detectable PSA.

  • Metchnikov
    6 months ago

    I too had my Gleason upgraded after DaVinci
    I was 4+3 pre surgery
    Then 4+4 post surgery

  • Ironhead
    1 year ago

    My biopsy showed 3+4, after RP it was 4+5

  • Len Smith moderator author
    6 months ago

    Ironhead, I don’t know about you, but it was an unpleasant shock to know I had a Grade 5 prostate cancer. I’m sure you’re like me and glad it’s gone.

  • ninaw moderator
    1 year ago

    Not a good surprise, @Ironhead. @abackof made a similar comment below. Hope you’re still going strong with your treatments. – Nina, ProstateCancer.net Team

  • Ironhead
    1 year ago

    Thanks ninaw for your repy, still going strong just dealing with hot flashes like everybody else!!!

  • rdavis1030
    1 year ago

    My needle biopsy indicated a Gleason score of 7 (3,4). I opted for radical open prostatectomy, and pathology showed Gleason 7 (4,3), with 15% involvement.
    That was 10 years ago next month.

  • Richard Faust moderator
    1 year ago

    Ten years is quite a milestone rdavis1030. Hoping for many more. Best, Richard (ProstateCancer.net Team)

  • mitchden
    1 year ago

    In response to your question about the Gleason being lower, I believe it is possible. In my case, the pathologist read my biopsy as a Gleason 7 (3+4). It was in 1 core and in less than 5% of the tissue. I decided on surgery. I also decided to send the slides to a world renown pathologist at John Hopkins. He couldn’t confirm the diagnosis. The biopsy slides were then sent to another pathologist at Sloan Kettering who read it as a Gleason 6. A second biopsy was done and all three pathologists said 1 core was a Gleason 6.

    I agree that the only way to know the Gleason score is to biopsy the entire prostate.

    I recall reading a study which said that 30% of surgeries result in higher Gleason scores. I hope to remain in active surveillance as long as possible. I will have periodic biopsies the frequency will be determined by the PSA results.

  • Len Smith moderator author
    1 year ago

    Mitch, I hear you, but the truth is the actual Gleason score didn’t change. It sure sounds like the first pathologist was incompetent, and, unfortunately, despite all the medical training doctors go thru, like any profession there are still some dunces. How not to get Dr. Dunce is a tough question, and particularly when it’s a pathologist you’ll most likely never meet. But I’m happy for you that you got two other opinions. Len Smith ProstateCancer.net Moderator

  • Tnewman
    1 year ago

    I just had surgery two weeks ago. I had been on active surveillance for over a year and the doctor wanted me to continue and have the third set of biopsies. I opted for surgery. My Gleason was a 3+3 prior to the surgery. My pathology report was a 4+3 after the surgery. I had HG PIN cells and ASAP cells and a brother who is stage four prostate. I could not be anxious every single day while watching what he is going through. I made the right decision.

  • ninaw moderator
    1 year ago

    Those words “I made the right decision” are so good to hear, @tnewman. With all the stress that comes with making the choice, especially knowing what your brother is going through, it must be a big relief to have treatment. – Nina, ProstateCancer.net Team

  • abackof
    1 year ago

    Yes, increased from G7 to G9. Pathology rated tumor at T3; no lymph nodes removed. Continued treatment with RT.

  • ninaw moderator
    1 year ago

    Thanks for your feedback, @abackof. Glad they were able to catch it when they did. – Nina, ProstateCancer.net Team

  • Will Jones moderator
    1 year ago

    1. My Gleason was a 6 both before and after surgery.

    2. I chose surgery because my PSA went up to an 8.3 which suggested that my Gleason might be higher. It wasn’t, but I don’t regret shifting from Active Surveillance to surgery as my treatment. I will have my first post-surgery PSA next week and then meet with my urologist. I expect the results to be positive.

  • Len Smith moderator author
    1 year ago

    Will, I’m curious how long it it took your PSA to reach 8.3?

  • cmdrrgh
    1 year ago

    Don’t get let anyone talk you into watchful waiting, get the peoblem corrected and pray they get it.

  • ninaw moderator
    1 year ago

    Thanks for your input, @cmdrrgh. Watchful waiting certainly isn’t a choice for everyone. We’ve heard from a few people that were happy they chose it at first, and then continued on to another treatment. Everyone has their approach to it! – Nina, ProstateCancer.net Team

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