Welcome to the Oral Cancer Foundation, PAD! Im sorry you have a need for assistance with your rare medical condition!!!

The illness you have PVL, is known as Proliferative verrucous leukoplakia. Im very sorry, there isnt much info on our site about your condition. Being that OCF is an organization that promotes only scientifically proven medical info, its very unlikely you will find answers to your specific questions here. Our site is the largest oral cancer public message board devoted to anything/everything to do with oral cancer regardless of where the tumor is located (base of tongue, side of tongue, tonsil, cheek). Unfortunately OCF is probably not the best resource to help you with your medical issue. At OCF, 98% of our active members are here about oral cancer, not any of the numerous possible pre-cancers, minor mouth conditions or any other mouth ailments OC patients could have. Im sure it must be very frustrating trying to find info about your illness when it is such a rare disease. Since the majority of our members are here to discuss oral cancer (OC), its unlikely many will have been down a similar path as you are on. This has been inquired about a couple times in the past few years and Im sorry to report we dont have many here with experience in this very specific rare condition. Besides... what one person experiences will never be the same as what another patient goes thru. Everybody's different is frequently repeated around here! There's far too many variables with so many things that go into the cancer diagnosis, treatment or recovery phases its impossible to ever find 2 people who on paper appear similar but they never are an equal comparison to any other patient. While this specific type of PVL has a higher risk of it becoming OC that does NOT mean every person with PVL will eventually have OC. Hopefully the mass will NOT develop into anything more serious!!!

I did a quick search and found a reliable government site that might have something helpful? At least I hope it can help. You may need to ask your physician for other places you can obtain the info you are seeking. Heres the link to the website I found....

NIH rare diseases

Best wishes with everything!!!