Further treatment - Update

[Jansverr]

I had biopsy 03.09.07 (Gleason score 3+7) and prostatectomy 10.11.07. PSA started to rise soon after. Since then I have had radiation and been more or less on Zoladex injections the whole time. I started Xtandi in April 2019 and switched to Nubeqa December 2021.

The PSA started to rise in fall 2021 after being steady at 0.1/0.2 for a long time. It seems now the cancer is castration resistant. I had my last PET scan in May without any findings.

Two weeks ago I did a Scintigraphy on my bones which also did not show anything, just gave me a good explanation why my joints hurts

My PSA has climbed from 2,9 (18.10.22) to 5,7 (12.01.23 - 85 days) and to 6,9 (31.01.23 - 19 days), i.e. 3 month doubling time.

I will now take a CT and if that does not show anything conclusive, do another PET scan (my 4th).

My oncologist suspects the cancer could be PSMA negative. If that is the case, she says the cancer could be less aggressive.

Is that a valid opinion? I have been living with the PC (and having a good life) for more than 15 years now, God willing, I hope to do another 15.

I am grateful for any feedback.

[Tall_Allen]

If it is PSMA-negative, maybe it will show up on an FDG PET/CT (or, if there is an FDG PET/MRI maybe at Oslo University Hospital?). But, if there have been no CT-correlates (bone overgrowth or enlarged lymph nodes or lung nodules), the cancer may be micrometastatic.

[Tall_Allen]

Most have gross metastases big enough to be seen on imaging, but imaging has size limits.

[tango65]

Request a PSMA PET/CT with diagnostic CT and then a FDG PET/CT during the same week. I was in a similar situation and when the mets appeared in the PSMA PET/CT they also appeared in the FDG PET/CT.

My understanding is that PCs which do not express PSMA could be more aggressive and they could be identified by the FDG PET/CT and by diagnostic CT or MRI scans.

[NecessarilySo]

You've done well in spite of the high Gleason and considering 15 years. I had GS 7 in 2008 and managed to avoid crmpc so far, so we are similar cases but different. From my own perspective i have to wonder "where are they?" and I haven't a clue. I looked through scans online and don't see anybody has mets in hands so I have to figure that is not it. Microscopic may grow to visible on scans after a rise in PSA to 30 I think. New scans might not show anything so you might just wait for six months, and then PET and you will have a clue. But who wants to wait with crmpc? My own case, while waiting for scan evidence, I took in a lot of lycopenes (V8 juice mostly) but the PSA rose anyway. Eventually the scans showed me where to fight back and I used heat there. But mine is not cr.

p.s. Gleason score is 5 max each side so I presume yours is 3+4=7, not 3+7.

[Jansverr in reply to NecessarilySo]

Correct. 3 + 4

[j-o-h-n]

No wonder your joints hurt, you live in Norway........ No fee for this consultation.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/01/2023 6:27 PM EST

[Tall_Allen]

Metastatic means that it has escaped the prostate.