Hello @millielambert, I do not have that form of head and neck cancer, but have been fighting H&N cancer for 11 years at Mayo Clinic, Rochester MN. My advice for you with such a rare cancer is to pursue treatment at a large cancer referral center. The medical staff there will be better able to give you your best options. Even if only for a video visit second opinion, get all the information that you can. There are new therapies being approved all the time and the cancer centers like Mayo, Johns Hopkins, Memorial Sloan Kettering to name a few are going to have the newest information. Good luck to you.