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!

I have had leukoplakia, but the most important thing you have stated is that you are going to M D Anderson. Leukoplakia becomes cancerous at some percent of the time and mine did.
Great medical care has kept me enjoying life for many years after it was first found. You are going to a great medical team, so let us know how your appointment turns out. Tom

I am new here, too. I have had leukoplakia throughout my oral cavity and it is still active for the past 8 years. I am not familiar with/ PV. My surgeon at University of Chicago Medicine watches me closely, seeing her every 3 months, and when the Leukoplakia appears to get too thick, we do laser surgery that removes it. Her goal always to catch it before it becomes cancerous. If it is cancerous, the goal is to get it when it is stage 1, not waiting for it to progress and potentially spread. I am also a non-smoker and have none of the typical reasons to have this disease. I have recently had oral cancer by my cheek that was removed, again stage 1. I can not emphasis enough the importance of having an excellent ENT that specializes in these cancers. It is so important to watch any changes or thickening.

Good Luck!

Thank you for your replies.

I had my appointment at MD Anderson. MD Anderson requested the sample and ran their own testing. Both pathology reports came back with similar results. My MD Anderson doctor said I do have Leukoplakia, but he said nothing on my biopsy report or currently in my mouth points towards PVL. I do have multiple small areas of Leukoplakia, but he says that does not mean I have PVL. I have a follow up in 3 months and they will keep a watch on the areas.

I wish my original Periodontist could have handled the situation better. Even if I did end up having PVL, telling me "this is not good" and I was the first person he had seen with this in her 43 years of practice was not helpful, it made me panic.

I appreciate having this forum.