I'm still trying to wrap my head around my diagnosis, which was completely out of the blue. When my ENT removed my left neck lymph node he sincerely thought that he was removing a benign branchial cleft cyst. We were both shocked by the pathology report showing metastatic poorly-differentiated squamous cell carcinoma, P16 positive. In spite of two scopes down my nose and throat nothing else has been found. I'm extra worried because the "cyst"/lymph node broke open during surgery, spilling the contents in my neck. The surgery evidently went very deep as I'm still having pain two weeks out, as well as left jaw numbness and numbness of almost my entire left ear. Interestingly, my left shoulder is especially painful - I have no idea what happened to it during surgery. My first appointments with radiation and medical oncology are next Tuesday (May 11th); waiting is difficult. Any words of wisdom or hints for coping with the next several months during treatment? I appreciate having found this online community from across the ocean! (I'm from College Place, Washington State, USA).
Julie
I - and this is a personal choice - would reject radiotherapy or chemo without a good deal of evidence to make it a viable option. In my case there has only ever been fleeting evidence of the primary and, aside from 2 biopsies, none of the material removed (both tonsils and left lymph nodes from Level 2 downwards) has given me the evidence. The PET scan did glow in the tongue and the tonsils, but on the first round it was not there. Second round they found it then it went...
I'm keeping the big guns for a viable target! And I normally don't find the surgery too difficult to recover from. I suspect the last one was a bit of mental trauma as well as physical trauma; having been set up for the primary to be removed then finding it had gone. BUT all is OK now and I am back on the beer and most foods 
