I finally had my Axumin scan on 1/8/19 with my PSA at approximately 1.7 (last blood test on 12/26/18 was 1.5 and it's been rising about 0.1/wk). From what I've read, that would have given me about a 65% chance of detecting the source of my BCR. Well, nothing showed up. On the one hand I saw that as good news, certainly better than too much showing up, but not the "best case" result - perhaps an ogliometastatic situation where spot treatment could be combined with systemic treatment.
With those Axumin results in hand I contacted a PSMA scan clinical study and was accepted immediately - my scan is schedule for 1/24/19. Yesterday I met with my MO and Urologist to discuss the Axumin and future PSMA scans as well as there advised path forward. Both were very supportive of decision to pursue the more sensitive scan but I was surprised by their treatment recommendation after the scan is completed next week. Both have advised that without proof of metastasis that it was premature to begin ADT, let alone any consideration of a more aggressive approach with Zytiga.
I'm confused...having had a RP and adjuvant RP, doesn't BCR by definition mean that I have metastatic PCa? With a PSADT of 1.9 months I'm a little nervous about delaying treatment much longer but I was essentially told to chill out and enjoy the symptom free time period until it becomes necessary. A positive finding on the PSMA scan would presumably change their advice. Absent that, I asked what should trigger the decision to begin ADT and I didn't get a clear response. I came away from my visit to Johns Hopkins last October with a recommendation to not start ADT until my PSA hit 10 (at my current rate that would be in May). That seemed like too long to wait and Dr. Smith at MGH agreed...but he too was vague about when you start. Again, a scan "proving" metastatic cancer will shake things up but without that I guess I follow the vague guidance to chill until...well I'm not exactly sure when.