This is the first support group of any type I have ever joined. I can see from what I have read that my story is very similar to many. I started out with a tiny leukoplakia that behaved itself for many years, but I kept an eye on it. One day, it became irritated and so I had it looked at. It was small and subsequently removed. Pathology reported it did contain cancer, but the margins were clear. Four weeks later, I had a larger more aggressive lesion and so the journey begins.

Your experience sounds familiar. One thing that shocked me after I was operated on was the scar across my neck just at the Adam's apple which was done to remove and check the lymph nodes. That was 8 years ago and I believe that a newer procedure minimizes that scar so if you hear "neck dissection" mentioned, ask about the scar. If you have a team of cancer specialists with strong oral cancer experience, they should know how to deal the whole problem. If not, find a CCC (Comprehensive Cancer Center) and they'll be able to. TLC