Treatment for Gleason score 9-10 , group 5

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

@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.

Welcome, countryhill! It is bad enough to hear that you have cancer. But to have to learn that it is a Gleason 9 is a shock, like a slap in the face! My husband and I know how it feels and I am very sorry for you!

However, there are very good treatment options today. If there are four positive cores from one side "only", the cancer is hopefully in an early stage. If all contained in the prostate, you may have surgery. Or you opt for radiation. External radiation plus Brachy therapy plus hormones seem to have the lowest rate of recurrence, but with surgery as primary treatment you have better treatment options if the cancer does come back. Unfortunately, with very aggressive cells like Gleason 5, nerve sparing at surgery is risky. And unfortunately, they will put you on hormone therapy for at least two years, if you go the radiation path. You do need excellent doctors now!
Tell us more about you, what is your age, PSA history, imaging results, are there more details from the biopsy?
All the best to you! There will be a solution for you!

@notpetecrowarmstrong - Thanks for catching that. I meant somatic in this reference. I just had germline (Foundation One Liquid CDx) a month or two ago and I guess it was stuck in my head as I wrote this.

Also, look further into your MRI and biopsy reports. Is there any mention of cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma? (If not, that’s good.)

As others have mentioned, there are some standard next steps:
> PSMA PET scan
> Biomarker (genomic) test
> Genetic (germline) test

For your August 5th appointment, remember that urologists are almost always surgeons and will usually recommend surgery - Not for any nefarious reasons, but just because that’s all they know. (The old saying applies: “If all you have is a hammer, everything looks like a nail.”) Ask for referrals to a radiation oncologist and a medical oncologist.

The NCCN guidelines (see attached) give you a good starting off point with treatment options for very-high-risk disease; you can then tailor your own treatments based on that.

When you start studying up on treatment options, also consider side-effects of each and your quality-of-life expectations you have for afterwards.

Take it one step at a time. You’ll be fine.

I had Gleason 9, Grade 5, pre surgery stage 3a/b with one pin 10% cribriform contained. No Seminal or lymph spread seen. Lowered to stage 2a/b post-surgery. Chose removal 4 years ago which I would seriously reconsider today. Surgeon put an emphasis on nerve sparing as part of the sales pitch. And yes, it is a sales pitch. With Gleason 9 Grade 5, if doing it again, I would ask for wide margins. Cells can either get left behind or leak from the Prostate and get left in the prostate bed. It would be the same with a radiologist as they don't get paid unless their services are used. I chose removal and my PSA never went lower than .03. The desired post-surgery number with my lab is 0.014. 2 years later BCR with 25 sessions of EBRT radiation and 6 months of ADT with 3 months of Lupron and switched to 3 months of Orgovyx. There are discussions around shortening ADT treatment times as these drugs can contribute to CV issues. One strategy might be to talk to both the surgeon and radiologist, then get a second opinion from a highly rated GU since you'll have had your MRI, PSMA Pet, biopsy and perhaps genomic testing and make a treatment decision at that point I am 16 months post radiation and currently 1 year out from all treatment and undetectable. Best wishes on your journey.

G 9 dx'd July 2022
Resources that helped me:
Patrick Walsh "Surviving Prostate Cancer" 2023 edition
Prostate Cancer Foundation PCF.org free Patient Guides by email or hardcopy
Best wishes

Hi,
I would think like others have commented that a PMSA PET scan would be in order to see if your cancer has spread outside the Prostate capsule. The two standards are some type of radiation with testosterone reducing drugs(ADT) both before and after radiation. Surgery is the other standard usually with no ADT drugs. Sometimes on occasion surgery is used followed by ADT and radiation. I would imagine that you will talk to both your Urologist and a Oncologist.

Dave 3+4

JackB
Gleason 10,grade5,invasion of the left seminal vesicle,suspected metastatic left illiac lymph node, no sites of distant metastatic disease. PSA of 1.75. Treatment 44 sessions of radiation and ADT for two years to end this October. Testosterone <.03. For duration. Oncologist visit in two weeks with new blood work. What next?

@05271935 PSA every 3 months, tapering off to every 6 if your numbers remain stable.
However, it is up to your oncologist; he might want to monitor you even more closely due to your high Gleason score and localized spread.
Phil