Was on active surveillance, now gleason 3+4: Any advice?

With apologies to all of the guys who routinely follow and contribute to this blog like I do, I once again have to say the same thing that I have been writing a lot lately for the new-arrival contributors who are just starting their prostate cancer journey: While your Decipher Score is good, that only means that you are fortunate and do not likely have any prostatic cancer genes. While valuable information, that is all the Decipher Test Score is - a "genetic screening" test that speaks to your stratified risk assessment for longevity and mortality over 5, 10, and 15 years. That is important to know. But...the more important thing is your Gleason Score, and what it does NOT offer. The prostate biopsy with Gleason Score merely tells you: YES, you have prostate cancer, or NO, you do not have cancer, and the degree of the cellular pathology. Unfortunately you have cancer and it has progressed to what you and others might seemingly feel is a "low/moderate-risk" Gleason Score of 3 + 4 = 7. With that in mind...
My urologist was confident and gave me confidence with my own Gleason 3 + 4 = 7, saying "we caught it early." I too only had 6-10% of cells rated as "4", so I too was very close to still being a 3 + 3 = 6. But he still wanted to do the radical prostatectomy, which we did. Then came the bad news, and this is where guys have likely already read my previous comments: "The Gleason Score is just the tip of a big iceberg, the majority of which is lurking under the water, unseen, and undefined." My surgical pathology of the entire prostate revealed much more ominous pathology that took me from what my urologist and I thought would be a T1 or at worst a T2 cancer, to a pT3b cancer, with a 25-50% recurrence rate probability "within" the next five years.
The darn Gleason Score could not, and did not, reveal that I had Extraprostatic Extension ("EPE"), nor the resulting "surgical margins" (cancerous tissue left inside me because of the EPE to places unknown). I also had Cribriform glands - an ominous pathologic feature, and I had the really bad one: left (only) seminal vesicle invasion (from the EPE), but fortunately without nodule(s) or tumor established at the time of removal. My Decipher Score was seemingly more ominous at 0.5, dead in the middle of the 0.1 - 1.0 reportable score range, but...of the 22 cancer genes screened for, I was lucky and didn't have the worst genes, because my risk-stratified probability of longevity/mortality at 5, 10, and 15 years is that I have a 93% - 97% chance of being alive.
What I am getting at is that your Gleason 3 + 4 =7 may still be a low/moderate risk cancer with that nice Decipher Score, but...you may have serious pathology like I had, which shocked my urologist: "You seem to have a more aggressive and extensive cancer than the Gleason Score would have suggested (sic)." My urologist told me that I was the perfect example of why he does not ever do Active Surveillance, because it just gives your cancer more time to grow, with the key feature of breaking through the membranous capsule that surrounds and contains the prostate (a.k.a "EPE"). The only way EPE is determined is by examining your entire prostate gland "after" it is surgically removed. EPE is the decisive, critical factor of how your disease will be treated and hopefully resolved/cured...or "not." Once the tumor breaks out of the prostate capsule, all bets are off. It could have already spread to one or more lymph nodes, to one or both seminal vesicles, to your bladder neck, etc. That is why both of your seminal vesicles and both vas deferens are removed along with the prostate...not only because without a prostate you don't need them, but also because at the time of surgery, it is still unknown if you had EPE and the tumor spread to other areas. That is only known...the extent of your cancer is only known...when the entire prostate, seminal vesicles, and vas deferens are examined by the pathologist, who then yields your most meaningful classification of your cancer. And only that will tell you the course of your life and treatment thereafter. No prostatectomy with a Gleason 3 + 4 = 7 equals lots of unknowns. My personal, experienced opinion, is to have the prostatectomy now, hopefully before the tumor grows to include EPE and all that goes with that. Good luck to you.

@capatov

i am scheduled for a cyberknife consult in mid feb at nyu langone. do u feel thats a good option

@wcsanford4
PSA can jump around a little bit. You aren’t on a drug that would reduce your PSA so sounds like things are just fine. Probably would’ve dropped even without the pectin.

What do you do before the PSA test can affect the number.

I think, based on my limited knowledge of medicine and your clinical situation, that Cyber Knife is another term for SBRT (Stereotactic Body Radiation Therapy) and yes from my non-medical perspective I think SBRT might be good. You will have to ask your Radiation Oncologist as some PC requires low dose long term radiation vs. 5 highly targeted SBRT sessions

Good luck with your treatment program

@kjacko Now I'm wondering if 4+5 was accurate.

Your urologist will order a MRI to see what is going on inside your prostate.

@tdoriausername From 2016-2022 I had 2 MRIs, both showed nothing. My first biopsy, nothing. My new urologist decided on a biopsy after my second MRI even though the MRI was clean. Just my luck that everything kept coming back different than the previous test.

@capatov Thank you so much for all of this advice. it is all very helpful.

@kjacko Okay

@wcsanford4, you may also be interested in these related discussions:
https://connect.mayoclinic.org/group/prostate-cancer/