Your story mirrors mine EXACTLY. I was a biopsied as a "barely" Gleason 3+4=7 with just 6-10% of cells being rated "4". I was nearly a 3+3=6: Three cores normal/healthy/no-pathology; 3 cores 3+3=6, and six cores 3+4=7 with just that 6-10% having level "4" cells. The only other thing identified from the biopsy was perineurial invasion, which my urologist said: "don't worry, anyone with prostate cancer has it." Then came my post-surgical pathology report:
Extraprostatic Extension (EPE); Surgical Margins; Left Seminal Vesicle invasion without tumor or nodule (just cells); and Cribriform Glands. The left Seminal Vesicle invasion took me from what my urologist thought would be a T1 or T2 at worst, to a pT3b with a near-guaranteed Biochemical Recurrence and return of the cancer "within" 5 years post-op. My urologist was quietly humbled saying: "I guess your cancer was more aggressive than I thought." But he added that this was the perfect example of why he never does Active Surveillance. As he told me in the biopsy report summary appointment that discussed my options: "You have cancer, it is not going away, so why give it two years to grow and get worse?" This is why I came to name the Gleason Score "just the tip of the iceberg." You can have a disarming, low or low-intermediate Gleason Score that gets you falsely and overly confident. But you did not see the massive part of the "iceberg" of cancerous pathology lurking under water. I learned that the absolute, pivotal feature of prostate cancer that will change the course of treatment, and your entire journey, is whether you have EPE. If you have that, chances are you also had Surgical margins, and all bets are off as to how, when, and where your cancer will spread post-op, if you are one of the unlucky 25-50% of pT3b patients whose cancer comes back. My urologist said that in his practice, he averages about a 33% recurrence rate of pT3b patients "within 5 years." I hate this saying, but: "it is what it is." We've been dealt a hand and we have to play it to the best our ability and a whole lot of prayer and good luck, that we can only hope goes our way to the positive. Good luck on your journey, and keep us posted on your progress.