Questions about Gleason 9 treatment and second opinions

Welcome and sorry you have joined the club. I am a retired Radiologist who knew a reasonable amount about prostate cancer learned during my career but have gained most of my knowledge since diagnosed with G9 in 2021 at the age of 67. Otherwise, healthy.

After my diagnosis in 08/21 I extensively read and used my professional contacts to obtain multiple opinions for treatment- RP vs radiation. My cancer appeared confined to my prostate by MRI and pre op tests. I choose surgery because: 1) I wanted the cancer out ASAP; the longer it was there the greater the chance of metastasis, 2) I wanted direct visualization of the cancer at surgery to stage extent of disease, 3) I wanted to hold in abeyance the radiation option for local recurrence. Surgery after radiation is very difficult because of the extensive scarring and complication rate increases.

My RP in 10/21 went fine. Minimal capsular extension with involvement of seminal vesicles (not good). My PSA 6 weeks post op was 0.016. Unfortunately, 3 months later it increased to 0.37. PSMA PET revealed a solitary T8 (spine) met. I received SBRT (radiation) to that vertebral body with good result. Still on no meds.

Three months later my PSA had doubled/doubled/doubled to 4.6. Repeat PET revealed a new node in my pelvis but no activity at T8. Presumed micromets given the PSA rise. Again, I did extensive research and had a Zoom consult with Dr. Ken Pienta (medical oncologist) and Diane Reyes NP at Johns Hopkins. I emailed Diane ( after I read a journal article by them called Total Eradication Therapy -who wouldn't want that!!) and got a response within one day. She offered a Zoom consult 3 days later on Monday morning. They spent an hour with me (couldn't charge because out of state Zoom-they did it anyway). Dr. Pienta actually recommended Dr. Sartor and Moffitt Cancer Center in Florida because they individualize treatment. I asked if he would treat me and Diane in the background is nodding her head yes. I liked what he said and asked if he would treat me. His response was "Charge!". He immediately put me on Lupron and Darolutamide and scheduled my chemo with Taxotere (triple therapy). I have never experienced such rapid response and professionalism from Dr. Pienta, Diane and Hopkins in general. I was getting a flurry of emails from Diane about getting my path for second review, medical records, scheduling my treatments etc.

My triple therapy was complete in 3 months. I had whole pelvic radiation 3 months after completion of my chemo). My PSA went undetectable after 2nd chemo treatment. No significant side effects. He discontinued my Lupron after a year. PSA remained undetectable for 3 years. He put me on testosterone replacement therapy (TRT) after 2 years because my testosterone didn't recover. He doesn't believe in extended/lifelong testosterone suppression. (As an aside, I know TRT is controversial. But I fully trust his opinion. He is the research Director of the Brady Urologic Institute at JH. He only treats prostate cancer. He is full professor in 3 departments at JH.He understands I want to live as long as possible weighing the side effects of treatment.)

I gained complete continence 6 months after my surgery. Unfortunately, I have become partially incontinent following the radiation. I have complete ED (but treatable).

My cancer was upgraded from a G8 to a 9 on review at JH. My MO said it really didn't matter as far as prognosis goes; G 8,9 and 10 are all treated the same.

There is much more I could say but I will leave it there. I reached out to about a dozen friends and referred strangers to talk about their experience with prostate cancer. It was helpful and comforting to me. I have paid it forward the last 5 years. If you want to talk with me directly don't hesitate to private message me and I'll give you my number.

Good luck. Fortunately there are many treatments for prostate cancer and more are coming. Hang in there.

I had a biopsy on July 24, 2026 and the results are 4 positive biopsy cores on the left side, PSA of 7, grade group 5 and Gleason score 9-10. August 5 is my first appointment with my urologist to discuss my results. At this point I’m just trying to get an understanding of treatments and side affects. Thanks.

Welcome and so sorry you had to find your way here. If you could post more details from your biopsy, more information will be forthcoming from the group. That said, if your biopsy says Gleason 10, it indicates a pretty aggressive cancer. (I was (am) a Gleason 9 (5+4) with 12 of 12 cores involved so aggressive is in my vocabulary). Next step in the process is a PSMA PET scan to determine if there is any spread outside the prostate capsule. Your Dr will probably also want some germline testing of the tumor. (They'll use material from the biopsy for that.) Treatment options cannot be compiled until after the PSMA PET scan. I will tell you that in my case, I was on ADT (Orgovyx) as soon as the scan was completed. Here's a few things to occupy your time while waiting for the next step. Best wishes!
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2025/03/Prostate-cancer-abbreviations-terms.pdf
https://www.youtube.com/@ThePCRI/videos

I had a biopsy on July 24, 2026 and the results are 4 positive biopsy cores on the left side, PSA of 7, grade group 5 and Gleason score 9-10. August 5 is my first appointment with my urologist to discuss my results. At this point I’m just trying to get an understanding of treatments and side affects. Thanks.

@mjp0512 Great advice, mjp0512.

One clarification for countryhill when he talks with his doctor: testing of the tumor sample from biopsy is "genomic" or "somatic" testing. This is what tests like Decipher and Prolaris do.

"Germline" testing refers to conventional genetic testing for hereditary mutations done through a blood draw: your DNA, not the cancer's.

Both types of testing can be valuable and provide information that could guide treatment decisions.

I had a biopsy on July 24, 2026 and the results are 4 positive biopsy cores on the left side, PSA of 7, grade group 5 and Gleason score 9-10. August 5 is my first appointment with my urologist to discuss my results. At this point I’m just trying to get an understanding of treatments and side affects. Thanks.

I had a biopsy on July 24, 2026 and the results are 4 positive biopsy cores on the left side, PSA of 7, grade group 5 and Gleason score 9-10. August 5 is my first appointment with my urologist to discuss my results. At this point I’m just trying to get an understanding of treatments and side affects. Thanks.