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Don’t know what I don’t know…diagnosed 5/13/25

Prostate Cancer | Last Active: Jun 9 6:52am | Replies (18)

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Profile picture for brianjarvis @brianjarvis

My first question when I read posts like yours is to ask how many years of PSA tests have you documented? The more history of PSA tests you have the better, because the trend of that PSA history tells a lot regarding cancer aggressiveness.

Some things to look for:
> You may not be able to lift weights, but there are types of resistance training that are geared towards cardiac patients. You’ll need that when the side-effects of the Orgovyx begin to kick in.

> You mentioned PNI; Does your MRI report mention anything about extracapsular extensions or seminal vesicle invasion?

> With your Gleason 5+4=9 (very high risk), did the biopsy report mention anything about cribriform pattern or intraductal carcinoma?

The PSMA PET scan will identity any detectable lesions, and will assign each a SUVmax score. You should know where those lesions are and what the SUVmax scores are. The SUVmax scores relate to the aggressiveness of the disease at those locations.

> The Orgovyx has two purposes: (1) to shrink the prostate to help with BPH; (2) in preparation for radiation therapy (since you’re not a surgery candidate). Have you discussed radiation treatment options with your doctor?

> Don’t start the Orgovyx until after the PSMA PET scan. There’s a direct relationship between PSA levels and PSMA sensitivity.

I have found it helpful not to overload the doctor with too many questions at once. Ask a few (up to a dozen or so) at one visit, then more at the next, etc.

Treatments today are incredible. The results of your PSMA PET scans will be key in determining next steps.

You’ll be fine.

(At 65y, with a localized 7(4+3) and PSA of 7.976, I had 28 sessions of proton radiation + 6 months of Eligard + SpaceOAR Vue. PSA now hovers between 0.35-0.55. Most recent PSA was 0.476.)

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Replies to "My first question when I read posts like yours is to ask how many years of..."

Thank you for taking the time for such a detailed reply. I'll try to hit all your points.

> Last PSA prior to 2025 was in 2015 and that was 0.4. My PCP retired and I didn't pay much attention to it (my bad) since my family history is heart disease with zero cancer. All males in my family for the last 5 generations have died of heart disease prior to their 69th birthday, except for me. I really thought I'd be dead by now.

> PNI (perineural invasion) was noted on the biopsy report. No MRI. Pathologic stages are entered as percentage scores in a Partin Table:

Organ confined - 19% Capsular penetration - 30%
Seminal vesicle - 28% Lymph node - 22%

> There is a very brief mention of cribriform / intraductal histology related to a recommendation for Germline Genetic Testing.

> Radiation treatment was briefly discussed but options will be detailed once PET results are received.

> I started Orgovyx the day after the PET

I think I got it all. Thanks again!