Erik,

I am sorry to see you going through these difficult times. It seems like about the same time you stop thinking about it, something pops up that churns you through the cycle again. Hopefully it is nothing to worry about and the doctors are just being cautious because they know how mean the beast can be.

I had a PET/CT two months after treatment for a baseline. I have since had one at 6 months and one at a year. There were three ROI's (regions of interests) on the first scan and they were certain it was only scar tissue since they all three were in the most intensely radiated areas, one being the primary tumor site. The second and third scans were compared to the first to determine any differences in area to evaluate growth in the three regions. My ENT and the radiologist and the medical oncologist and the radiation oncologist all read the scans and concur there has been no growth although they will continue to monitor at 6 months for precautionary reasons. They all agree that the PET/CT is by far the most accurate test and even offer the entire scan on CD (for a mere $15) to send to anyone I wish for a second opinion.

I was fortunate because I am allergic to CT contrast so my insurance had no options other than PET and the only PET facility my doctors use only provides PET/CT scans. They cost over $6,000 each. Ironically, the insurance company pays this but won't pay for having some questionable teeth pulled.

False negatives are the least likely result of a PET/CT and false positives are the reason they will do multiples over a span of time to use the first as a baseline for comparative purposes. In the meantime, try to not worry and if you lose sleep, work on just the night before the scans. I wish I could make it all go away for all of us but unfortunately it is now an integral part of our lives. It sucks.

Ed