Thank you for the information! However, Proliferative Verrucous Leukoplakia is not listed and probably for good reason. It is very rare, something like 1 in 7.1 billion people. One patient on this OCF website has it listed as a diagnosis. I don't see that there have been any further posts since 2009 from this individual, but I am still hopeful.
PVL rate of transformation to malignancy it about 85%. Over 75% of the patients are non-smoking females. I talked to one of the top research doctors in the country earlier this year. In his 40 years of involvement in several research studies he had only come across a few hundred patients with PVL and there is absolutely no common thread! It is often confused with other diagnosis and in my opinion should have been given a different name. Leukoplakia basically means white patchy oral lesion. Verrucous leukoplakia is common to men who smoke at a rate of around 90-95% of patients. PVL is entirely different in the way it progresses, treatment, anticipated outcome including survival rate.
In my case the very first biopsy, after two and half years of growth, came back diagnosed correctly and the oral surgeon did nothing because he didn't understand the pathology. The second biopsy performed by another oral surgeon came back as PVL and Squamous Cell Carcinoma with undefined margins. The Otolaryngologist they sent me to was clueless, which lead me to where I am being treated. It was a long road, but I wound up with an Otolaryngologist who specializes in cancer. He is located in the largest city in my state and has 4 patients with PVL. In a weird way I consider myself fortunate that the SCC and PVL were removed before it had spread in such a way that it would have ended my life. At least at this point there is a possibility of maintaining the progression as it occurs, although I had hoped it would take longer than 2 or 3 months for the new growth.
I am always interested in trying to find more information about PVL. Right now the only treatment is surgical removal of the affected area. Due the voracious nature, replacing teeth and jawbone is not an option. Thank you again.
