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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?
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