Hello Iwan,

Welcome to the forums.

I do not have PVL, mine was a plain jane leukoplakia with moderate epethelial dysplasia that I was told had a about a 10% chance of converting to oral squamous cell carcinoma over my entire lifetime.

For me that was about 5 years.

According to Sook Bin Woo's Oral Pathology text


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"This entity is defined by World Health Organization (WHO) as a distinct form of multifocal leukoplakia characterized by a progressive clinical course, changing clinical and histopathological features and is associated with the highest risk for oral carcinoma development. However, it differs from the more common localized leukoplakia in many aspects."

She later states "Over time, 50% to 100% of proliferative leukoplakias develop carcinoma."

So my two cents would be get established with a oncological surgeon, probably an ENT, and if at all possible at a Comprehensive Cancer Center (CCC---if that is not where you are already being seen or by whom you are being seen).

Lichen Planus, and PVL are on opposite ends of the risk spectrum with regard to likelihood of converting to cancer.

If the risk is that high, I'd imagine a CCC would take you as someone with a high risk potentially precancerous lesion.

They also may be better equipped to clarify the diagnosis

They may have new developments and treatment options and research trials at the larger teaching hospitals /CCC and more experience treating your condition.

Best wishes for a benign future for you, but I'd encourage you to dot your i's and cross your t's with regard to being diligent in your follow ups and staying on top of any changes, as it sounds like your variant can be a bigger pain in spreading and changing, even if it never becomes cancer.