I had squamous cell tonsil (HPV) removed cancer and I did ask about proton therapy. My cancer surgeon said it would be worth using if my insurance paid for it, but she honestly didn’t think it made a big difference in life quality. I had radiation and chemo, no surgery because it was in a place where I was told would require breaking my jaw. I had 6 chemo treatments and 32 radiation treatments. I too had a very painful earache, but no hearing loss. I still take meds for the earache. Mine however is being caused from a combination of nerves attached to my neck and throat. I have a throat ulcer that affects my ear every time I eat something that irritates it. Addressing the tonsil removal-why????? I never had anyone say my non-cancerous tonsil should be removed. I’d definitely recommend getting a second opinion on that.

Dana Farber is a highly regarded hospital and especially for head and neck cancer. They are actually involved in clinical trials using proton therapy. There are options with lower radiation and chemo or even no chemo depending on the stage. I was treated at Mayo Clinic and they are doing less radiation and chemo and getting good results depending on the stage of cancer. If I had the ENE I would want the chemo though to help lessen the chance of spread. They are being cautious since they have not found the primary site it sounds like. There is no harm in also getting a 2nd opinion from another center such as Mayo Clinic, MD Anderson, MSK but Dana Farber is a VERY good hospital and I believe it is ranked as #4 in the country for cancer.