I agree 100% with the opinion of retiredITguy.

You made a great decision by getting a decipher score. That high score concerns me. I was originally diagnosed with Gleason 6 in 2020. I wanted to get a decipher test run on my pathology and my oncologist thought it was a wasted effort and did not agree. That was a bad decision which I regret to this day. I had brachytherapy radiation in June 2020 with the hope of eradicating what was supposed to be low risk cancer while preserving urinary and erectile function. The only problem was that the biopsy missed significant cancer that would’ve scored at least an unfavorable Gleason 7 if not an outright 8. I was underdiagnosed and untreated, and the prostate cancer came raging back in 2023. It came back in the same spot that it originally was in 2020 and also a new spot on the other side of the prostate along with two affected lymph nodes. This time my Gleason score was 9! My oncologist retired due to health reasons, and I could not find anyone in the Chicago area that was familiar with brachytherapy and had to seek treatment elsewhere.
I was unsuccessful getting an appointment at MAYO and received my first opinion at Barnes Jewish Hospital in St. Louis, 340 miles from my home in the Chicago area. They are a center of excellence for prostate cancer . They were unwilling to consider surgery and wanted to treat me with more radiation in the form of proton therapy with a high dose Brachytherapy boost. The trouble was that the cancer was adjacent my urethra, and I likely would’ve had to have had a urinary diversion and an ostomy bag for passing urine. My second opinion was at Northwestern Medicine in Chicago. They were unwilling to treat me with more radiation and instead recommended salvage robotic prostatectomy which I underwent in January 2024. I then underwent 31 sessions of IMRT to the pelvic lymph node basin and am currently undergoing 24 months of first and second generation ADT. My chances for cure are far from certain now. All because I was incorrectly diagnosed with low risk Gleason 6 cancer

So why am I sharing all this? Both urologists, the surgeon, and two separate oncologists all agreed that it would’ve been in my best interest NOT to act on the Gleason 6 diagnosis when I did in 2020. They would’ve had me monitor PSA at least every three months and then have a repeat MRI and biopsy once my PSA doubled. A decipher test would’ve also been ordered at that time. Their rationale was according to their experiences they’ve seen very few examples of true Gleason 6 prostate cancer. Gleason analysis performed on post RP pathology usually shows higher Gleason scores than that shown on biopsies because biopsies often miss significant cancer.

Based on my personal experience, that’s what I recommend you consider. True Gleason 6 does not evolve into more aggressive cancer and while you might have to repeat a biopsy on an annual basis there’s little reason for you to go through life-changing surgery or radiation if it’s truly Gleason 6.

if on the other hand, you get treated with IMRT for Gleason 6 and your biopsy understates PCa you likely will close the door to other options such as robotic surgery and or more radiation. Salvage robotic prostatectomy like what I had is very rare performed because radiation causes a lot of scar tissue that makes surgery impossible. I’m told that only 1 in 100 previously radiated patients are eligible for salvage robotic prostatectomy. I was lucky.

I spent a lot of time meeting other prostate cancer patients while waiting my turn for radiation. My story is not unique in his matches everyone that I met, who is undergoing some sort of salvage therapy was underdiagnosed. All of us wished that we had chosen surgery over radiation as initial treatment and lived with some temporary challenges for continence and sexual function.

Choose wisely and best wishes for success on your journey. Please feel free to message me directly if you want to chat about any of this.