I was diagnosed with advanced prostate cancer back in February 2022 and went through the usual rounds of CT scans, MRI and bone scans. This led to treatment with orchidectomy and apalutamide. About a year later I had another MRI which showed my Mets were smaller. All good news so far.
Fast forward 2 years the only monitoring of my cancer has been 3 monthly PSA levels (and a few other levels they monitor if you're on apalutamide). I've been lucky my PSA is still undetectable <0.1. However, every now and then I get two or three days of aches and pains in my Mets sites. I mentioned this to my oncologist as it was worrying me and wondered whether a scan might be useful? I've been told I don't qualify for any new scans as my PSA is good and I'm not in constant, new or increasing pain ( IE the cancer isn't running riot!).
We are constantly told PSA isn't good enough to be used as a screening measure, but it seems to be the main indicator when you have cancer?!?🤔. I noticed in the analysis of the ARCHES study - https://www.asco.org/abstracts-presentations/ABSTRACT368820 that over 50% of the participants had radiological progression without PSA rise! I've mentioned this to my oncologist, but this doesn't make any difference to their scanning criteria.
So I'm now in the situation that I either wait until things get dramatically worse with my cancer, or choose to get a scan done privately to ease my fears/confirm that everything is actually ok. I'm thinking of going for a gallium 68 psma pet scan, despite my very low PSA, as it seems to be the most accurate test, Gloucestershire couldn't do it anyway as they don't have a scanner and has it might indicate future lutetium 177 treatment suitability.
What are your experiences with scans to check on progression? Are you on the same situation? Shouldn't we be checked at least every couple of years? Would you/have you gone for a private scan?