Hello everyone - thanks in advance for any thoughts or opinions!
Here's the abbreviated version of my story:
My father was diagnosed at 51 and died at 52 of metastatic prostate cancer (think his PSA at time of diagnosis was in the 40s, but cannot remember for sure).
I've been diligent with PSA and DRE since I was 25 (yes probably way early for the testing, but I at least have a long string of data points). My PSA has never been over 1.45.
In 2019 (was 50 at the time) my PCP found an abnormal DRE and referred me to a Urologist (PSA 1.24 at the time) The urologist thought it was a calcification and did not order any additional testing (assuming due to the low PSA). In retrospect I should have pushed for more testing, but I got an answer I wanted to hear and moved on. I had annual appointments with this urologist for 4 years until he retired and referred me to another MD in his practice. In November of 2023 the new MD (despite a continued low PSA of 1.23) ordered a MRI due to the abnormal DRE.
In pretty quick timing I found I had - PIRADS 5, biopsy, 6 of 12 cores positive (all left side), Gleason 7 (4+3). PSMA-PET showed no additional spread and "Ill-defined radiotracer uptake within the prostate on early phase imaging without localization of a focal lesion."
RALP at a nearby NCI Treatment Center in January of 2024, pathology showed no spread at all, no sign of cancer in any of the 7 lymph nodes taken. Also several weeks later got my Decipher results (this was ordered before the surgery but I didn't get the results until later) with a disappointing .99. Surgeon (different urologist than the one that did the biopsy) suggested follow up with ultra-sensitive PSA testing every 6 months.
Because of the high Decipher score I followed up with an oncologist to see if there was anything else I could or should be doing to minimize the chances of recurrence. The oncologist seemed a bit perplexed - I had what was likely high-risk cancer for 4 years without any EPE or evidence of spread on the PSMA. He seemed relieved when he read the PSMA comment listed above about the "...radiotracer uptake within the prostate..." as he believed that this suggested my cancer expressed PSMA and therefore it was a useful tool. He suggested ultra-sensitive PSA every 4 months and repeat imaging at the end of this year. I've had 2 follow-up PSA tests and both have been undetectable.
I had another follow-up with the urologist who did the surgery this week, and he believed that I have a cancer that does not express PSA, and therefore a PSMA might not be as valuable. He suggested a repeat "regular cancer" PET scan instead of a repeat PSMA. He also thought that since the PSA tests were cheap and relatively non-invasive there was some value to continuing them.
So I'm honestly confused - what type of surveillance should I expect moving forward, and should my next scan be "regular cancer" or PSMA? Any other thoughts? Sorry for the long post and thanks again for any opinions!