Last year I had HIFU focal therapy for localised cancer, Gleason 4+3, in one small part of my prostate. Subsequent scans show no residual cancer anywhere in the prostate but a recent PSMA PET scan has found it in 2 pelvic lymph nodes. (The PET scan was ordered because my PSA had hardly fallen at all from its pre-hifu level of 7. It's now about 8 and rising.)
A pre-treatment PET scan in late 2022 showed no such lymph node involvement, so the cancer presumably escaped during the few months between then and the HIFU procedure.
I gather from the Scholz videos on Youtube that prostate cancer in lymph nodes is a worse situation than in seminal vesicles etc. This is because it's cancer on the loose and free to travel, as opposed to just the primary cancer slowly extending itself locally.
I assume I'll now be put on HT, which I'd hoped to avoid. But I'd still prefer not to be stuck on it for life. And I don't want to be told I'm having 'systemic' treatment alone, without targeted action against the 2 specific lymph nodes. I think they should be zapped with targeted radiotherapy or taken out surgically, additional to the probably inevitable HT.
I'm awaiting my next appointment with focal registrar (NHS urology dept at London teaching hospital - I suspect I'll be transferred to Onco). In the meantime I'd be very grateful for advice from others on my situation, and especially on how to 'navigate' the NHS in order to avoid being stuck on permanent 'systemic' treatment alone, on grounds of my age (mid 70s).
I've tried looking up NICE guidelines etc, but the guidance on pelvic node involvement seems to relate either to patients BEFORE any treatment, or after prostatectomy. Whereas my case relates to focal treatment which has successfully given me a cancer-free prostate, but not in time to prevent spread to pelvic nodes.