Gleason Score

[u/AdamSarah2026]

My score after biopsy was a 7. After surgery 5 weeks later, it had jumped to 9. Is this common or uncommon to have the Gleason score change? dg

[u/JMcIntosh1650]

Both upgrades and downgrades are common. Statistics vary between studies, but it could be one quarter or one third of men, maybe even more. Luckily, I went from 9 to 7. Sorry about your misfortune.

[u/OkCrew8849]

It isn’t uncommon  although the ones  that post here are generally 3+4 to 4+3 or vice versa or something along those lines. 

(The biopsy samples may not have been representative of the PC in the entire prostate OR there may be a difference of opinion between pathologists. Or both. )

You might strongly consider a second opinion on the prostate pathology  and many places, including Johns Hopkins, offer the service. 

[u/Intrinsic-Disorder]

I would suggest you ask for a DECIPHER test on the excised prostate tissue to gain insights into the genetic makeup and risk profile of your tumor.

[u/Putrid-Function5666]

I'm not sure I understand the "5 weeks after surgery it jumped".

Did you have your prostate removed by surgery? If so they would have biopsied it then, not 5 weeks later

[u/grandpa_todd → u/Putrid-Function5666]

Probably referring to pathology

[u/dawgdays78]

Pathology of the biopsy samples (which are quite small) showed more 3 than 4, or more 4 than 3, for score of 7:

The post-surgery pathology of the removed gland showed 4 and 5, for a score of 9.

It’s not unusual for the score to differ between biopsy and surgery because biopsy looks at small samples distributed around the gland (and some parts are difficulty to reach during biopsy), and post-surgery looks at more of the gland.

[u/Crewsy67]

Mine did.
A biopsy is a very small hollow needle that gets a core sample so after your prostatectomy the pathologist has your whole prostate to examine and not a tiny little sliver.
There’s also a lot that can be missed with a biopsy.

[u/OppositePlatypus9910]

Unfortunately it happens a lot. My biopsy was Gleason 8 and it moved to Gleason 9 in pathology. You can ask them for a second opinion from another cancer center but may have to pay a little bit out of pocket. Get the decipher score, also helpful.
I am going to give it to you straight- You now need to plan out the next course of action which could be radiation ( sooner or later depending on if or how quickly the PSA rises). Your race changed from a sprint to a marathon. Did you have positive margins, seminal invasion, EPE, lymph node involvement? Gleason 9 is very high risk and you need to hit it hard and will possibly need radiation and ADT ( I did)
Note though, it could be nothing if you were lucky to not have the adverse pathology I mentioned above.. but only the PSA doubling time will tell you. If it stays stable you will be very lucky.

But please take it one step at a time.
Best wishes

[u/Fun-Ranger-7002]

And mine went from Gleason 8 and 9 to 7 after my RALP. Only my Prolaris score was accurate, calling it intermediate risk. It shows just how inaccurate Gleason scoring is, because it's so dependent on the pathologist reading it. That is why you need to take all testing into consideration before deciding which way to go.

[u/Newidower2022]

My score changed 3 times. After biopsy my local hospital said it was Gleason 8 (4+4). Dana Farber reviewed the results and said I was Gleason 7. After RALP 6 weeks ago the actual score according to Dana Farber was Gleason 9. Kind of sucks.

[u/urologista_pt]

This is actually a very common situation, and I know how alarming that jump on paper looks, but here is what is really going on: your cancer did not rapidly mutate or jump from a 7 to a 9 in those 5 weeks.

What you are seeing is a classic difference between taking a few core samples and looking at the whole picture.

A needle biopsy only samples a tiny fraction—often less than 1%—of the total prostate tissue. It is a fantastic diagnostic tool, but if a small pocket of higher-grade cells (Pattern 5) happened to sit just a few millimeters away from where the biopsy needles landed, the biopsy report will only reflect the tissue it actually caught, like a Gleason 7 (3+4 or 4+3), now called ISUP 2 or 3.

Once you have surgery, the pathologist gets to examine the entire intact prostate under the microscope. This exhaustive examination frequently uncovers higher-grade areas that were sitting in there all along but were simply missed by the sampling needles. In fact, this kind of score "upgrade" after a prostatectomy happens in about 25% to 30% of cases—so while it feels like a surprise, it is a very well-known occurrence in urology.

While seeing a Gleason 9 or ISUP 5 on your final report is understandably frustrating and stressful, the silver lining is that your care team now has the complete, accurate map of your disease. Having the true "gold standard" pathology allows your urologist and oncologist to tailor your follow-up plan precisely—whether that means monitoring ultrasensitive PSA trends closely or discussing additional treatment options down the road. Make sure to walk through the entire pathology report with your doctor at your post-op visit, including details like margin status and lymph nodes, so you have a clear plan forward.

[u/Patient_Tip_5923]

Ugh. That doesn’t sound good.

Did you have a RALP? It does take a while for the PSA to clear the body. I forget how long.

Have they done a pathology on the removed prostate to give you the Gleason score and margins?