It's interesting. The ENT I saw in Boston (who helped me find the speech pathologist who had expertise in swallowing problems for radiated patients) said they don't use PET scans--I assume because of the problem with false positives.

I've had two so far and I heard from my ENT here (in NY) that both showed no signs of recurrence. But I read over my medical records when I was carrying them to the doc in Boston and in fact the first PET scan said there was an area that lit up on my tongue and in my throat that could be from healing tissue or could possibly be a sign of recurrence. When I had that first scan done I still had a LOT of inflammation in my mouth and throat and my ENT certainly knew that so I guess he decided it wasn't something to worry about.

The second PET scan I had just over a month ago, though, was done by the same person and because they had the September baseline, the report from this one said clearly that although there were some areas that still were lit up, they were in the same place (but not as strongly lit up) as the September scan and so were pretty clearly due to healing tissue or residual effects of surgery. The report concluded "NO signs of recurrence". So if you get a baseline PET done it can help interpret future PETs better. But I can see why some docs wouldn't want to go near them. if my ENT was being really paranoid about having overlooked something, who knows what he would have done in reaction to that first scan.

Nelie