I was diagnosed with HPV 16 positive tonsil cancer T2N2M0 in May 2025. I was going to proceed with the photon/cisplatin standard of care: 35 radiation treatments 70 gy and 7 cisplatin...until I found out about proton radiation. Despite intensive questioning my local radiation oncologist did not explain this was an option...until I discovered it on my own.

I decided that I was willing to travel for proton radiation. I consulted with 6 cancer centers including MD Anderson and MSK. I ultimately decided on Baltimore, MD. I completed treatment in the beginning of September 2025. I experienced mild to moderate mucositis, xerostomia, lost taste and lost 12 pounds but did not need a feeding tube. I did not require opiods. I used only gabapentin for pain and was off that 30 days after the end of treatment. I just had my six month visit. No sign of cancer. Taste is about 60% and improving. Saliva is improving. My radiation oncologist says both my oral cavity and throat are healed. He specifically stated that he thought that if I saw an ENT that they probably would not be able to tell that I had radiation. So my experience was a good one. I did not have to travel the distance you are facing, however, and I had no insurance issues. Medicare covers 80% of proton treatment with no approval necessary. My supplemental plan paid the balance. Throughout my consultation experience I found that if a hospital did not offer proton treatment then they minimized any potential advantages. I firmly believe that what matters most is that your radiation oncologist have considerable experience in radiating head and neck cancer.

Best of luck to you for a smooth treatment and the best outcome.