The only thing I will add to what Gary posted is that our ENT and RO are comfortable with PET/CT scans under following conditions:

1) It is a *fused* PET/CT

2) The first one is given no sooner than 3 months after end of treatment, to allow maximum healing to take place and for inflammation to reduce.

3) It is done at a center where they do a lot of head and neck cancer scans

4) It is read by a radiologist that has read many of these scans and has a good feel for what is cancer and what is not. (We asked Barry's radiologist (at Hopkins) and he told us he only does HNC and brain cancer scans and has seen 100s of these. )

Otherwise, according to our surgeon, these scans can result in a lot of anxiety and confusion. BUT (he added) he has known them to catch residual and recurrent disease early, much earlier than could be detected by physical exam alone.

Thus a double-edged sword...

Gail

Rhonda, one thing that we have not said in this thread is that the rate of false negative is very low. In other words if the PET is "clean" then it is a good thing. Also, to help with the knots in the stomach, remember not to freak out if they note "something" on his scan. It is common to have ROI (region of interest) which does not necessarily mean cancer just something to look at later.

To clarify what Gail said a PET/CT by it's very nature is a "fusion" of 2 images and because of geographical reference points, the accuracy is much greater. They can more effectively rule out anomalies in the scan and reduce the false positive rate. It is also possible to have a separate PET and CT and have the images fused (but not as accurate). There are software packages that will do this. Her ENT is the exception from what most here have experienced. Essentially what she said is absolutely right - it is a double edged sword.

I looked to my early scans to verify that I was cancer free and they ended up causing me even more angst since none of my MRI's, for the first year, were "clean". Both of them sent me back to the head & neck surgeon for "direct visualization". So instead of basking in a cancer free glow, I was adding to my anti-anxiety medications. None of the anomalies amounted to anything. (just like Mark said)