I told the oncologists and the ENT that I didn't want them going to Stanford. I wasn't going to trust any choice made by the hospital's pathology department. They sent it there anyway. The tonsil BX was negative--no surprise given the situation you mentioned. We had accepted an occult primary after the 2nd biopsies (tonsil/oral cavity) came back negative. The diagnosis is being based on a p16 positive stain. The CCC diagnosed a branchial cleft cyst with no evidence of carcinoma. I have found studies that confirm that cells will show up positive using the p16 stain in both Branchial Cleft Cysts and SCC HN. It is a difficult diagnosis for even highly qualified pathologists. Branchial Cleft Cysts often look like SCC and SCC often looks like Branchial Cleft Cysts.

His MO has ordered another PET scan (the first one was done after the first biopsy, which seems backwards, and also after he had thrush following a throat infection and allergic reaction to antibiotics that caused his lymph nodes to swell.) The scan may reveal a completely different situation which could alter the treatment plan. Also, he will opt for microsurgery to try to locate the primary. We know it may yield nothing, but it is worth a try. We want to minimize the field of radiation.

It has been a protracted process while holding a ticking time bomb. I appreciate any assistance or guidance you can offer.