Mark and I met with NCI Cancer Center Head and Neck doc today. 99.9% sure the primary is in the tonsil. Very good odds 80-90%. Sugery first: 3 installments: endoscopy on Monday to get tonsil biopsy and get a good look at other stuff. Tonsil removed robotically on Friday, and then 10 days later the lymph nodes in the neck come out. 1 month later to be followed by Radiation definitely and possibley Radiation and Chemo.
Asked about the PEG, they will wait and see how he does. Asked about gaining weight, doc said not necessary, asked about which chemo: Cisplatin. Asked about IMRT, that is a yes. Not need for the PET at this time...false positives can waste time on wild goose chases. PET later.
Feel I get a better sense of what lies ahead here on these message boards. Perhaps doctor not talking about the brutality is a strategy to keep people calm.
I must say, my anxiety was low and my knowledge base was high because of what all of you have shared with me. As caregiver I feel I am in a very good place going in. May be harder for me as it gets harder for him...to see him in pain, or sick, or unhappy. I know you all are here.
What do I need to know now?