Gleason 6 But high decipher score.

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.

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!

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.

First Decipher has a history of erring on the HIGH RISK side of their analysis .
Two, with Gleason 6 I agree " Why are you rushing into other than active surveillance at this time ?
I assume any creditable Urologist would recommend AS .

In 2020 did you have an MRI Fusion Biopsy , if so How many coress did they take ?
Worldwide the majority recommendation is Active Surveillance. Regular PSA , possibly an MRI at 12 to 18 months , followed by a Confirmatory Biopsy . The latter to connfirm there is no Gleason 7 or worse .
Where you given this option .?
As I understand it . The Liquid Biopsy tests Decipher , 4K etc. are PRIOR TESTS to eliminate the need for a Biopsy thus reducing over treatment of patients

Great questions.

My insurance at the time would not cover anything but a standard 12 core US guided biopsy and my knife happy urologist at the time didn’t have the training and facility access for a Fusion MRI guided biopsy. I sought care with another urologist at the same care center who was also a radiation oncologist that performed a 24 core stereotactic US guided transperineal mapping (grid type) biopsies. Insurance wouldn’t pay for that either so I paid the ~$1k difference out of my own pocket to have what I believed was a superior biopsy to the standard 12 core. The pathology found Gleason 6 in one of four cores in the right anterior apex, 5mm discontinuously involving 25% or the submitted tissue. (It’s believed now that the needle “skimmed” the margin of the 1.6 cm PIRADS 4 lesion shown on the pre-biopsy MRI and missed significant high risk disease).

Active surveillance was mentioned as an option but was never recommended over treatment. Focal brachytherapy was recommended with the belief that I’d never have to worry about PCa again. Since my PSA had doubled in 6 months and I was blissfully unaware of the aggressiveness that often accompanies short doubling times I agreed to the procedure. My PSA nadir was only 2.21 and while I expressed concern to my doctor that it didn’t drop lower and almost immediately started rising, I was only assured that I had been “cured” and not to worry. My requests for subsequent MRIs and biopsies were ignored. When the doctor ceased practicing due to medical reasons I sought care elsewhere and was independently advised by no less than 5 doctors at two different centers of excellence that it was their belief that I was under diagnosed and under treated.

Friends have suggested that I consider a malpractice lawsuit against the doctor and the care center that he worked for. I’m undecided.

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 want to echo this advice from retireditguy. Dr. Walsh's book is a must-have for valuable information. I was diagnosed with aggressive Gleason 7 (T1c) at 53 (2.2 PSA) and I'm having surgery next week. My decision was based in part on my age and the increased risk of cancer recurrence in 20 years with radiation, I'm hopeful that I caught mine early enough to remove it all with surgery. But as you surely know, the side effects are scary. Educate yourself and get a few opinions. It sounds like you are on a solid track for success. Good luck!