Hello, I am new to the forum. My periodontist removed a small spot along the gumline of my tooth before Thanksgiving. Yesterday I went in for the results and first thing out of his mouth was “this not good.” He then told me he does not know anything about PVL, and I was the first case he had seen in his 43 years of practice (and I live in a huge city). We left very discouraged to say the least and was numb all day.

I felt better BEFORE my appointment because my regular dentist called me and told me what the report had said and he summed it up by saying - the lesion showed characteristics of Proliferative Verrucous Leukoplakia (PVL), so I need to be monitored and keep a close eye on it. That didn't feel quite as bad to accept. The periodontist gave me no optimism at all.

I am 57, female, non-smoker, who rarely drinks. My leukoplakia was along the gingival margin of my tooth. The biopsy reports suggest PVL because of “verruciform hyperkeratosis with hyperplasia and inflammation” & “signs of mild to focally moderate epithelial dysplasia.”

I am currently in the process of trying to get into MD Anderson.

I have not found anything good online, and it is depressing when I am trying to figure out how to fight this and feeling a bit down in the dumps.

If you have PVL or had leukoplakia along the gingival margin, I would love to hear your experience or any information you can provide.

Thanks so much!