I have 3 doctors on my team- (1) chemo oncologist, (1) radiation oncologist and (1) ENT surgeon...only the surgeon is recommending a PET for follow up, but is leaving up to me...the other 2 Dr.'s don't like the false positives AND then the fall back of a false positive at this stage- CT with and without contrast; as well as detail examination...logic being do the fall back to start.
2nd based on my experience- my original diagnosis came from a swollen lymph node...surgeon planned on going in for biopsies...but wanted a PET before- PET came back with hits on tonsils (both) and base of tongue left side...surgeon took tonsils (both and biopsy of base of tongue left side...then based on his experience took base of tongue left side, and a few other locations...
tonsils were negative as well as base of tongue left side...only by the Dr's experience did we find primary site at base of tongue right side...PET scan did not show any hit on base of tongue right side...so not only did I have "false positive" and had "true negative"!