Susan, your responses have been very helpful to me. The original ENT was awful(understatement) so we are really waiting to hear from Sloan to get an idea of what the tx options are.

The ENT has not even bothered to call us with the PET results(they came back Tues). My husband just happened to be in our GPs office for for something else and he called in to get the results of the PET.

This board has been an incredible resource in the meantime since our MD info is so limited. It is tough getting a hard dx and not being given guidance on what to do. We happen to be resourceful people but I shudder thinking about folks that deal with MDs like we have that are not educated in general to the medical world. Makes me appreciate the advocacy work that goes on here..

So the "treatment plan" we were given is very general so far. He was very definitive in his telling of it and he may be right but I want to hear it from someone who inspires more confidence.