Yeah, I get it, believe me. I felt the same feelings of rage and disappointment when it was revealed to me - 4 YEARS after my surgery - that the surgeon’s notes indicated a ‘tiny’ break in the capsule…WTF??? A TINY BREAK!??
So as my PSA is slowly ticking UP, and I am asking the urologist for a referral to an RO to prepare myself for the inevitable, he’s been telling me to relax because my rise could be caused by this or that…all the while knowing about this ‘tiny’ breach…huh?
When I exploded he told me - “Hey, the margins were negative! You’re good! It’s the margins that are important”.
Well, obviously not, OK? Either the margins were not negative, they weren’t important or the pathologist was blind…
But I’m not telling you this to show incompetence, ineptitude or wishful thinking on the urologist’s part.
I tell it because none of it really matters in the long run. What will be will be…
We want CLARITY, we demand words like positive or negative; we crave phrases like ‘no suggestion of’ or ‘no uptake evident’…We become like the Cowardly Lion repeating the mantra ‘I DO believe in spooks, I DO believe…’ We want to fall back on some ‘undeniable’ fact or test result to put our worries to rest; but we can’t.
It’s all educated guesswork and being on this forum finally opened my eyes to that scary truth. You’ve been here long enough to hear all of it: a great patho report that checks off all the boxes, but a recurrence a few years later. A bad report and still no sign of recurrence decades later…can a sane person even begin to figure this out???
So let me just say in closing that the only real truth is: time will tell - time and PSA. Get all your genetic testing done to cover all your bases, but even then nothing is guaranteed; just another data point which can be argued by the experts until our eyes glaze over…
For me, the only thing that is certain is the uncertainty and like the Cowardly Lion I too mumble my mantra: “Who knows…who knows…who knows…”
Phil
Best
Phil