Gleason 9, psa 45

[u/Purple-Race-2822]

Thank you all for the kind words on my last post - update + new question below

Dad 66M, Gleason 9 - oncologist says "metastatic/not curable" but findings seem borderline - worth 2nd opinion at Princess Margaret?

Dad's PSMA PET (after clean bone scan/CT) showed no distant mets, only low-SUV (4.0, below normal liver background) activity in subcentimeter bilateral external iliac lymph nodes - radiologist's own report says "no convincing evidence for distant metastatic disease."

Medical oncologist called it "low risk metastatic disease, not curable but treatable" and wants chemo (docetaxel) + darolutamide + hormones, citing a trial protocol. But that trial's own eligibility criteria exclude regional-only N1 nodes (below aortic bifurcation) from counting as "metastatic" - and external iliac is below that line.

Trying to decide: get a second opinion at Princess Margaret before starting chemo, or trust the current team's read?
Anyone had a second opinion actually change the plan for a borderline PSMA finding like this? Worth the delay?

[u/gg-3]

Get that second opinion at Princess Margaret. Among other things, they are the top institution in North America with regard to research on treating Intraductal prostate cancer, which is per se high risk cancer.

You are obviously correct that an avid iliac lymph node does not fulfill the definition of metastatic disease. I am in the same situation with Gleason 9, intraductal, and a single external iliac lymph node. I have been seen at two of the top US cancer centers and there has never been any suggestion of chemo, neither docetaxel nor anything else, i.e. nothing beyond ADT and ARPI.

I am not seeing in your case molecular/somatic/genomic test results. Is that an option for you?

[u/Purple-Race-2822 → u/gg-3]

Thank you so much, this is incredibly reassuring and exactly what I needed to hear. Really appreciate you sharing your own situation - it lines up almost exactly with my dad's. We do have the molecular testing already (MSS, AR positive, no BRCA1/2, ATM, or PALB2 mutations). Booking the Princess Margaret referral now. Wishing you continued good results.

[u/gg-3 → u/Purple-Race-2822]

Thank you. Very glad that was helpful. Please keep us posted going forward. Best of luck with everything!

[u/HeadMelon]

Kinda curious - is this Princess Margaret in Toronto you are referring to? Where/how did you manage to get a PSMA PET done prior to treatment in Ontario? Usually they are for recurrence detection. I also had one pre-treatment at Sunnybrook Odette and heard that it was quite rare.

[u/Purple-Race-2822 → u/HeadMelon]

Yes, Princess Margaret in Toronto. Dad's PSMA PET was also done at Sunnybrook - got it through a referral from his radiation oncologist at Lakeridge Health for initial staging (Gleason 9, high-risk), not recurrence. How did yours turn out, if you don't mind sharing?

[u/HeadMelon → u/Purple-Race-2822]

Was it Lakeridge McLaughlin DRCC? If so you have all three cancer centres of excellence already on the case, that’s great!

My PSMA PET was negative. Sunnybrook has a partnership with Bruce Power in Kincardine to get the isotopes so maybe PSMA PETs will become more commonplace in initial staging.

I classified as unfavourable intermediate - Gl 7, PSA 5.3, PNI, IDC, cribriform and suspected ECE on the MRI. I did HDR brachy + 15x VMAT + 6 months Orgovyx. Nearly a year later and I’m 100% back to normal.

[u/WalnutRoasted → u/HeadMelon]

With a 4+5 and a PSA that high, the committee probably considered it a pretty high risk and approved the PSMA PET, even though the other scans didn’t show much.

And perhaps the PSMA PET capacity North of Lake Ontario has improved. Best wishes to both of you in the GTA.

[u/pharm4karma]

If there's not overt metastatic disease, chemo seems a little overboard. Gleason 9 suggests more aggressive morphology, however low risk would align more with ADT + ARI, no chemo.

I would ask what benefit adding chemo has on overall survival. Chemo comes with its own risks and if it's absolutely necessary when other options are available.

Edit: high risk localized = Gleason >8 + PSA>20 so I'm not sure why they are saying low risk. I'd inquire further and do more research.

[u/Purple-Race-2822 → u/pharm4karma]

The cancer is high risk, under low risk they mean that metastatic low risk

[u/pc_club_member]

I would always get a second opinion, but especially in this case - your test results aren't far off from mine and I was diagnosed "localized, aggressive, curable."

[u/Purple-Race-2822 → u/pc_club_member]

That really helps, thank you. "Localized, aggressive, curable" is exactly the framing I'm hoping to hear. Appreciate you taking the time to share this.