Hello. I'm 76 and had TORS and a neck dissection two months ago for throat, base of tongue, and lymph node cancer. My diagnosis was T2 N1 M0, p16 positive. My goal was to avoid radiation and chemo, mostly because I read deeply about long-term consequences of the radiation but also because I have some kidney issues and wanted to avoid chemo if at all possible. I joined the CuSToMIze trial at the University of Michigan because if, after surgery, it was thought that I needed chemoradiation, I could receive it at a reduced dose (time) depending on the amount of "cleanup" that was needed. My surgery resulted in clean margins, and two of the seventeen lymph nodes removed were infected. After surgery, like your husband, I was (am) considered cancer free.

The tumor board recommended that I not receive radiation, and I did not/have not tried to second guess them on the recommendation. I suppose I could have made the decision to get the radiation, and they would have done so. My surgeon and I discussed the possible need for radiation down the line, and I see that he wrote in his notes that "Radiation would be an excellent salvage option for recurrence, which would be rare." I understand that recurrence runs at about 10%, which you also mention.

I feel comfortable going with my surgeon's and the tumor board's recommendation. I guess it's like playing the odds. I really, really hope it doesn't come back, that I don't need the dreaded and debilitating radiation. I'll go back for a PET scan and second HPV blood test the first week of June to see what's happening. Until then, I'm working on swallowing exercises, using the prescribed toothpaste, and building my strength/stamina back up in case I need the radiation. I'm happy that I'm going to get in a month of (old-guy) tennis before any radiation, should it be needed.

I understand the difficulty of your decision. I decided to follow my team's advice. I just don't want to do the radiation unless it's absolutely necessary, even if it is at a reduced rate.

Good luck, and I'm happy to share more about my ongoing experience if you have any questions.