lvredrock - I understand your frustration. I had invasive squamous cell 5 years ago under the tongue. T1N0M0. It was surgically removed. For 3 years my followups were perfect. Then they noticed something, wasn't cancer, but the topology had changed. Surgically removed. Now at the 5 year mark, it's back - not invasive, caught early. Also, NOT HPV, and I also do not (and never have) smoked or chewed. Everything I read says survival rates are cut in half on recurrence, so naturally I am scared. My doctor also says that there is no explanation for the recurrence, just that this is what happens, the body just doesn't build those cells correctly anymore - and that this may go on for the rest of my life - round after round.

I have an excellent doctor, but it seems, in this arena, nobody really understands the cause or why it keeps coming back.

I guess the good thing it to keep catching it early, but the bad part is constant surgery.

I'm looking for answers - does anybody know if that stuff on the internet about survival rates cut in half for recurrence is true?

Does anybody understand why it keeps coming back?