Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Ok you guys have re opened my big BIG complaint from late September. I had a regular visit with my ENT and at the end I asked him to set up a PET scan. In short he said NO. Now you all have heard me rant about the stupid application of logic in the choices doctors make...This one has me going. I have good insurance (after my wife went back to work at one of the worlds largest insurance companies) so cost is not the problem. The ENT said he had just come back from a "seminar" on the subject and they "just weren't worth the trouble" (because of false positives.) He then reminded me about my 3 year 7 month statistics. I suggested to him that the statistics weren't in my favor when I got this stinking cancer at way too young an age (statistically) and I told him that I could give him several names of OCF members whom are presently fighting PET found recurrences. He was not moved.
I find it humorus that doctors would not go whith a test because "there is no long term clinical data supporting it's use (PET)" when in fact PET units are being installed everywhere! How do they expect to pay for the damn things?!
My personal and wacky belief is that the competing MRI-CT equipment is still not fully paid for so the manufacturers are spreading rumors to give them the edge.
My problem now is to find a way around my ENT without offending him. (He is a great guy otherwise) He is obviously stuck in the larger statistics mode and I am more concerned with my personal small group (of one) survivor mode. Remember in a group of one you cannot have 65% survival! Any suggestions on how I might go about getting a well deserved PET scan would be appreciated.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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