Scans

From my understanding, when your Gleason is that high and that many cores are positive they probably want to do a full PET scan on you to make sure which treatment is best for you. It might be the difference between radiation treatment to try to kill the cancer everywhere versus a prostatectomy that would only eliminate it in your prostate. Gleason 9 is pretty high. Essentially they want as clear as a picture as they can possibly get to recommend the best treatment for you.

I proactively asked for a PET scan when my scans showed a bulge, I ended up not doing it because I had so much other prep I was doing but my doctor told me it wasn't a bad idea - and I was Gleason 3+4 in a single core but a bulge on the tumor.

This is a good thing. They're being thorough & cautious.
With a 4+5 - even a small amount - a full scan would better inform their treatment recommendations.
Sounds like you have a good team that want to cover all bases.
A PET scan is a great start.

stew80
PSMA/PET is whole body scan.
The use of PSMA‐PET may be particularly valuable in staging of primary or biochemically recurrent prostate cancer in patients with cribriform pattern disease detected on initial biopsy or radical prostatectomy. https://pmc.ncbi.nlm.nih.gov/articles/PMC9349597/
It could be that your providers are talking about a PSMA/PET when they say PET. Alternately, it might be that your tumor doesn't produce PSA.
You can call the physicians office and ask or call the radiology center where you are scheduled for the scan. It you aren't scheuled for a PSMA ask for a reason. We'll weigh in on whether the reason is reasonable.
You should be told by your physician if your tumor isn't producing PSA.

Thanks 'Gently'. Although my Gleason score is high my PSA numbers over the last 12 months have been sort of consistent which I found strange knowing the aggressiveness of the cancer. PSA was 12.3 in Jan 2024. The last PSA was 12.3 in January 2025. There were some ~ 9, 10, and 11 PSA readings sandwiched in during that time. Essentially, in a 12 month period, the PSA stayed relatively the same. I pray that indicates no mets, but who knows. The scans will show that soon enough.

You do have a very aggressive cancer, cribriform really makes it more aggressive. Some people have very low PSA’s, but their cancer continues to metastasize, That could be you.. I do not understand why they would not want to do a PSMA pet test. That test has essentially replaced the CT scan and the almost worthless bone scan. It would also make sense for you to have a FDG Pet scan as well, since your PSA isn’t rising quickly that would show metastasis that don’t produce PSMA and would not show up on a PSMA pet test.

I’m not sure where you are seeing a doctor but I think you need to get a second opinion. Try to get yourself to a center of excellence. If not a Genito Urinary Oncologist can direct your treatment, they specialize in prostate cancer unlike medical oncologist.

Do not accept the PSMA pet scan refusal. That it very important at your stage.

Well, I'll certainly question the team. Maybe after the other scans a PSMA will be recommended. I'll know more next week. I have a Zoom information session on Tuesday 11 Feb where I can ask questions.
I didn't know that a bone scan was almost worthless.

Hey @stew80
I haven't looked into it too much, I'll just add that what your team is moving towards seems to be fairly standard, it may have something to do with the cost of the PSMA PET scan. The insurance folks may not like it until after first round of treatment. (I had to fight to get mine paid for at all).

My docs did exactly what yours are trying to do. An MRI with contrast and a bone scan before treatment. After BCR, then my team did the PSMA PET scan to see if they could find out what was going on. My uneducated guess is that they want to do the CT since they've already done an MRI and it was negative.

Yes Web, I agree. But let me add that this is where you spend the $$ you were saving for vacation, a car or a new deck. This is YOUR LIFE, Stew, and nothing’s more important than that. Pay now, fight later if it comes to that.
Phil

I'm willing to pay if it comes to that for sure.

Yes, but you shouldn't have to.