Gleason 6 But high decipher score.

My best piece of advice is go to a recognized "cancer center of excellence" if that's an option available to you. Google it and you'll easily find one. I did (Mayo Phoenix) and I was very happy I did. I felt the advice and care was outstanding. Also, I'd recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making. In the end I felt at 70 with my family history and my numbers that surgery was the best option for me and that's what I did in late June 2024 at Mayo Phoenix. So far the results have exceeded my expectations but frankly time will tell. Best wishes.

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.

Thank you so much for your detailed response. One thing I did do was do an MRI and from there we get a fusion biopsy in which they were able to go directly to the tumor and then they did their other samples throughout the prostate. I have heard too many horror stories with removal of the prostate, including my brother-in-law 15 years later is still wearing diapers and has no sexual function. I’m only 69. All of the research I’ve done has shown that IMRT radiation outcomes are almost exactly the same as surgery. I’m not willing to give up at this time. That is the reason I am considering. IMRT Radiation. But if they recommend ADT along with it, I may reconsider. I have two more consults before I make my final decision I’m treatment. One is with a highly reveal oncologist radiologist at Cleveland clinic here in Port St. Lucie Florida and the other is with the mayo clinic in Jacksonville. It’s been three weeks since my diagnosis and I hoped to start getting treatment in late August early September. Which I’m assuming is not too long with a Gleason six tumor. Thanks again and I wish you the best also

I want to apologize for the misspelled and improper grammar above as I’m using voice texting. But I believe you got the gist of what I was saying. Thanks again.

Thank you so much for your detailed response. One thing I did do was do an MRI and from there we get a fusion biopsy in which they were able to go directly to the tumor and then they did their other samples throughout the prostate. I have heard too many horror stories with removal of the prostate, including my brother-in-law 15 years later is still wearing diapers and has no sexual function. I’m only 69. All of the research I’ve done has shown that IMRT radiation outcomes are almost exactly the same as surgery. I’m not willing to give up at this time. That is the reason I am considering. IMRT Radiation. But if they recommend ADT along with it, I may reconsider. I have two more consults before I make my final decision I’m treatment. One is with a highly reveal oncologist radiologist at Cleveland clinic here in Port St. Lucie Florida and the other is with the mayo clinic in Jacksonville. It’s been three weeks since my diagnosis and I hoped to start getting treatment in late August early September. Which I’m assuming is not too long with a Gleason six tumor. Thanks again and I wish you the best also

Many may not agree but i do not know why you would go ahead with any treatment at this point.

You have a base MRI. Get another in 6 or even 12 months and evaluate the situation accordingly.

Low PSA AND a low Gleason? That to me is a "wait and see" .

Maybe get a 2nd opinion on your Decipher if you are on the "very nervous" end of the worry spectrum.

Reading your response to robertmizek where you mention your brother suffering incontinence, I totally understand being influenced by family history because when I mentioned my family history in my initial reply to you, it was because my brother was initially diagnosed about 25 years ago as early stage cancer. But later it was found the initial grading was wrong and the cancer was much farther along. So my family history inclined me to lean towards expecting the worst, so I was biased towards wanting surgery. After the surgery my prostate was found to contain both cribiform and IDC (having both is very not good), so I was glad I had chosen nerve-sparing RALP. Wherever you get your treatment done, ask the surgeon if you're a good candidate for surgery, if it'll be the nerve-sparing, and what kind of chances you'll have of incontinence or ED. When I asked that question, specifically for my case with him doing the surgery, the surgeon told me I was a good candidate for surgery and gave me some percentages of what I could expect (with of course no guarantees). I was pleasantly surprised that the numbers were higher than I would have expected. I'm now at 30 days since surgery and after catheter removal I was immediately (essentially) 100% continent and I actually had intercourse yesterday. It wasn't even close to my best, but I was pretty happy nonetheless. I'm really not trying to talk you into the surgery, but rather I am agreeing with robertmizek that I believe nerve-sparing RALP in a cancer center of excellence today isn't what guys generally had available to them 15 years ago. Try to get numbers that reflect your specific situation so you have all the best data when making your decision. Best wishes!