Just got these results. Not sure what to do. Any thoughts?

First, I'm sorry for the stress you're experiencing. Take a breath, and be kind to yourself.

So you have Gleason score 9. Regardless of the result of the genetic testing you'll probably undertake, that's considered serious, and will require a significant intervention (like a prostatectomy and/or radiation therapy). The Decipher genetic test will help confirm how aggressive it is, and a PSMA PET scan can check whether it's spread anywhere else in large-enough volume to be detectable.

In addition to the intervention, you will likely spend some time on ADT (like Orgovyx) and maybe an ARSI (like one of the -lutamides) as well.

Make sure you talk to a medical oncologist and a radiation oncologist to get information about the full range of options available to you. It's worth travelling to what the Americans call a "Center of Excellence" to make sure you're getting the best and latest treatment, because it's changing fast.

Is there hope? YES! If the cancer is still confined to your prostate, you have a reasonable hope for a cure. Even if it's escaped your prostate, the newest treatments and best practices may be able to keep you going for many, many years (and there will be new and even better treatments soon).

Best of luck!

I'm sorry for the results. Like you, I got my results in my portal before anyone talked to me and it freaked me out too, and I was even a bit pissed that I had to decode the results before a doctor could explain them to me - but it then led me on a path of discovery about what Gleason scores were, and what they meant and how to read it.

This is not a fun disease, but know there are lots of guys here that have gone through or are going through the same thing, you can learn much on here - just always remember that a public form isn't a substitute for a medical degree. You should not just get your doctor in the conversation but you might consider lining up two more urologists right now as second and third opinions - different hospitals and preferable all from cancer center of excellence hospitals as they are the best you can get for cancer. For me I also lined up three radiation oncologists and three medical oncologists so I could get a variety of opinions and weigh my options.

The sooner you become your own advocate the better off you will be.

Good luck and God bless, there are speed bumps ahead but we'll help you steer.

@northoftheborder covered a lot of information quite well. One point he did make was that you will have a lot of options and have a chance to live a long life.

You have a pretty serious case and I’m not sure that the urologist is your best choice. As previously mentioned, a center of excellence would be much more appropriate for somebody with your level of cancer. You need to get scheduled for a PSMA pet scan to see if the cancer has spread.

Some things to be aware of. Your biopsy showed cribriform and Perennial invasion.. They are a problem. Some doctors at a recent webinar said that if you have 3+4 Gleason and cribriform it’s as bad as having a much higher Gleason score. If the cribriform is larger than .25 mm it is more aggressive than the smaller cribriform. You could ask to have that checked. Perennial invasion also makes you high risk.

You are already a 9 so it is something to be concerned about, It should be really interesting to see the decipher score results.

Your biopsy had 3/4 of cores cancerous, that is on the high end, compared to other people. Your doctor may want you on ADT and another drug like Zytiga or one of the.lutamides For over 24 months. That will give you a better chance of having the cancer stay away, so don’t be surprised, be ready.

They may want triple therapy if a PSMA pet scan shows metastasis elsewhere in your body. That includes chemo. They are also talking about doing polarify with somebody in your situation, If you have metastasis. It May work better done earlier.

Stew, cannot contribute much more to what the others have said - they really covered all the bases.
Reading your biopsy reminded me all too well of the day I read mine. It was a gut punch like no other! My legs actually went wobbly.
But even though what you have is a fairly serious grade of prostate cancer, it is totally TREATABLE . You are NOT gonna die from this because you caught it, OK? Nicer to catch it earlier, but as others have said, even if it got into the surrounding tissue it is still very treatable with all the modalities we have today.
Cannot emphasize enough the need to be treated at a center of excellence ( major cancer institute like Mayo, Sloan, Leahy, Anderson, etc). Only they can treat you comprehensively - a TOTAL plan for your treatment and recovery whether it includes surgery, radiation in all its different forms, hormonal and chemotherapeutic agents. Don’t let yourself be treated by one doctor for this and then another for that if the first treatment fails, OK? You are building a mansion and you need an experienced team of contractors working for the best architect, GC and project manager you can find - no shortcuts!
Sorry to give you that very unscientific analogy but I think you get the idea of what you need to do…Best
Phil

Thanks Phil. I appreciate your feedback along with the others. Gut punch for sure. Going to start organizing the re-building of my mansion. I'll test the waters with the prostate center in my town and see if the team like you describe can be organized. If not, I'll seek a center that does. I'll give updates as they unfold.

Stew80:
Sorry to hear your biopsy results.
I was dx'd July/Aug 2022 at age 72 w/ G 9 at a teaching hospital in Pennsylvania. PSMA PET scan was questionable/suspicious for pelvic lymph nodes
Received 2d opinion and surgery Aug 2022 at Johns Hopkins, Baltimore, MD.
Excellent surgical recovery, however escaped cells locally (extraprostatic extension EPE) and confirmed G 9 on pathology postop.
90 day postop PSA .19 (persistent PSA).
Salvage Radiation w/ 4 mos Orgovyx Feb - June 2023.
6 mos following completion of radiation uPSA tested < .02, and that has continued thru Nov 2024. Next 90 day test late Feb 2025.
I feel normal physically and have for the past year and a half.
Surgery or Radiation would appear to be the primary choices of treatment, depending upon your feelings and overall health. And both have their advocates, benefits and drawbacks.
Personally, I have no regrets, although it was a challenging 12 - 18 months.
I consider myself fortunate, and hopeful for the future, although I fully expect recurrence at some time.
I wish you well in your treatment investigation and decisions.
And yes, this really is hard.
Best.

Shades of my G-9 Grade 5 with Cribriform 3,4,5 contained. Had mine removed and lowest psa post was .03. After a 2years it rose to .22 which triggered a psma pet scan and the results showed no spread. I understand it is normal to have some psa left in the bed and will be treated with 25 sessions of low radiation and ADT. The one thing that has really helped me is to live in today after the surgery. I have today as tomorrow is not promised. Good luck and get your treatment done.

Here's what to look for at a cancer centre:

- affiliation with a university med school or equivalent, where the oncologists teach as adjunct faculty and are actively involved in research (this will make sure they're up on the latest treatments)
- multidisciplinary teams with good coordination (e.g. you have a single shared chart that they all work from), possibly as part of a larger hospital network — for example, your radiation oncologist should be able to refer you to colleagues who are medical oncologists, urology oncologists, cardiologists, hematologists, or whatever else you need
- you have access to help outside of appointments, e.g. a patient hotline answered by oncology nurses who can escalate your questions to the doctors as needed and get back to you quickly
- not essential, but nice to have: a bloodwork lab that's part of the facility and can turn around results quickly (hours, not days or weeks)