I have been diagnosed with a condition called Proliferative Verrucous Leukoplakia. The information I have so far is that it is a rare (1% of the population) aggressive form of Leukoplakia which turns to cancer easily and frequently. Four biopsies have been done so far. The first showed pre cancer/surgical removal recommended; the oral surgeon did nothing. The second biopsy by another oral surgeon showed squamous cell carcinoma which extended beyond the edges of the sample, it had spread. The third, performed by an otolaryngologist cancer specialist, was surgical removal of all the cancer at the time, which included the removal of two teeth and part of my lower jaw bone; good news the cancer had not invaded the bone. The fourth was removal of a piece of gum that protruded after the surgery; wasn't really worried and not really surprised that is was not cancer. From the time of the third biopsy to the last biopsy the leukoplakia had spread .5 cm about .2 cm wide from close to the area of the cancer around an existing tooth. Currently the length has doubled, spreading around the other side of that tooth. The ENT took measurements at the time of the fourth biopsy and since it appears to only be leukoplakia at this point I will wait until my next appointment unless I notice a change like in the past.

I found articles on the internet and studies on the subject of PVL. Although my Otolaryngologist/ENT seems very knowledgeable about the condition because I am one of five patients he has with PVL. He suggested that any information I could find on the subject can always be helpful. I tried to contact a couple of the doctors who authored the articles/studies, but none have returned my calls. I was asking for information on their knowledge of the subject and on any current studies being done on the subject. No luck so far. Does anyone else have PVL and/or information about the disease?

As is apparently common with this condition, I am female, never smoked, have only occasionally had a drink during my life, no HPV, no Epstein-Barr, or any other affliction other than a mild hereditary heart valve condition. However, I am younger than the typical age by 10 years. I already consumed a high vegetable/rarely any meat type diet, so I already had a high beta carotene/Vitamin A diet which my doctor suggested at this point I couldn't have too much. I am an avid runner, walker, hiker, golfer, etc. Go figure!

My ENT said if I had any vices the other doctors would have payed more attention to my symptoms and diagnosis. A chain of events driven by luck, divine guidance, or something to that effect is what I have to be thankful for only losing two teeth and piece of my jaw bone. As of right now cancer free for the time being!