Hi Mandi,
I can pretty much ditto what Karen said. I am a musician, DJ and give teaching/training to companies for medical device regulatory affairs and need my voice. Like Karen also, my tumor was pretty good sized - 6 cm x 3 cm, on the tonsil.

My tumor was "well differentiated" and "focally invasive" which means it was pretty much contained in the immediate tissues and there was no mets detected. It almost filled my entire throat. Had it been "not well differentiated", my treatment course MAY have been very different. Then again, it may have stayed the same. They were taking out certain lymph nodes with the radiation, in fact, the radiation oncologist mentioned there were "...many regions of interest" besides the immediate tumor. I had IMRT. I presume that most of these were precautionary.

Disclaimer: My head and neck surgeon recommended against the surgery, maintaining that the odds of survival were just as promising with radiation and chemo alone. But this is my story and since each one of us is different, this is really more for entertainment value (or to provoke a healthy discussion of ALL available treatment options, especially for the newcomers) than should be considered a basis for their own treatment decisions.

Some would maintain that the "1-2-3 punch" - (slash, burn and poison) has the highest rate of survivorship. I personally have not seen any numbers (yet) to suggest one way or the other. If anyone knows of any scientific studies out there, please let me know.

What I am getting to is, IMHO, it is difficult to second guess what the original treatment plan would, should or could have been. I would think that the doctors would err to the conservative approach, not wishing a liability suit.

One option I do have (if necessary) is what is called "salvage surgery".

Your second sentence question is probably ALL true.

I did have a consensus among my three primary doctors that radiation and chemo would be efficacious for me. Had there been disagreement, then the outcome may have been different also.

A negative PET scan might just be showing scar tissue or other anomalies also (virtually all tests have a "false positive rate" -some are as high as 50%!).

I can truly empathize with your feelings, having recently had an MRI that I thought might have been a little more positive. We are programmed to run with the worst case scenario and the bottom line is you (or I for that matter) don't have all the data yet. I would have faith and keep a postive attitude that everything will work out rather than empowering it with negativity and fear.

I would also agree that maybe it's better to discuss the ramifications "off-line". My fears can infect my relationship and are passed easily to my wife (they call it "transference"). She gets scared, then I start feeding off it and it can be a very nasty cycle. You are wise to process it yourself first, especially since your husband has struggled with it.

And being a patient myself, I can truly empathize with his struggle also.

You will both be in my prayers also.