Hi @gypsylaura,
I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer (2008) as it is literally adjacent to my left tonsil. As others have said here is get a second opinion and make sure it is from a cancer clinic.
I had hesitated with getting the neck dissection too since I had no cancer in any of my lymph nodes on my pet scan, but I went to the top two cancer clinics who specialize in the head & neck cancer in WI, and both had proposed the exact same treatment option, so I felt comfortable. It was really to make sure the lymph nodes and other sections of the neck all had clear margins thus, I avoided any radiation and chemo additional treatments especially since I had both back in 2008 with my tonsil cancer. In addition, I don't know if I would have accepted any more radiation either since it probably was the cause of my tongue cancer.
Time will tell if it was the right decision in getting the neck dissection. I definitely have some Neck Fibrosis from it so far in which I have to get PT for.
Good luck on your journey and God speed.