Nanci --

My husband is in a similar situation -- his dentist noticed a small leukoplakia on his tongue in early May. The report for the initial biopsy, by an oral surgeon, indicated moderate dysplasia but warned of a possible "skip effect" and strongly urged a more thorough examination; a subsequent excisional biopsy by a local ENT showed SCC in situ and a bit superficially invasive. A followup PET scan had no areas of concern.

At that point, he began being seen by a Johns Hopkins CCC ENT and had his excisional biopsy slides re-read by the Hopkins CCC pathologists. So far he has not required additional treatment (knock on wood).

He has had two "everything's fine" checks at Hopkins and is being seen there every four to six weeks for the first six months. During the second six months, that will stretch out to every eight to 10 weeks, assuming everything stays good (another knock on wood).

The doctor noticed a small white dot during the first check, but he was not concerned and it was gone at the second visit. Both my husband and I know that oral cancer is pretty much all that these physicians see, so they recognize what could be a problem and what likely isn't. My husband is also checking his mouth himself to be on top of anything that might crop up.

As Brian wrote back when I first asked on the boards about leukoplakia (before we knew it was SCC): "Keep an eye on this from now until forever."

I wish you the best.

-- Leslie