Hi All,

My first post was in response to someone why had a similar diagnosis to mine, but I read that it's better to introduce myself in a separate posting.

Here I am. 57 yo Male with a 15 year history of Oral Lichen Planus who recently has tongue surgery to remove some lesions. The Pathology report came back with a result of PVL (proliferative verrucous leukoplakia) as a likely cause (not definitive). But here we are, 3 months later and a new lesion which needs to be removed. I'm happy this one is not on my tongue as I do not wish tongue surgery upon my worst enemies!

Worried? Yes.
Scary? Also.
Accepting? Not Yet.
Taking this serious? Definitely!

Would be very interested to get in contact with people with similar experiences.

I'm not in the US, so not much point in pointing me to US specific treatment centres (although I know you mean well!). I think my oral specialist knows what she is talking about!

Back to see my surgeon in just over a week to discuss how to remove the new lesion. Fingers crossed it's less serious than I currently anticipate!

Great to see so many people here reaching out with a helping hand or sending some positive fibes!

Take care all!

Iwan

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.

Hi aotagandco,

I was recently diagnosed with PVL even though my oral specialist thinks it might be my Lichen Planus which flares up.

In November last year I had some lesions removed from my tongue (surgery which I cannot recommend anyone volunteering for!) and a checkup earlier this month identified a new lesion.

The pathology of the first lesion stated "These features are in the spectrum seen in proliferative verrucous leukoplakia. Clinical correlation is required and regular
review is recommended. Further biopsies may be indicated."

I now have a meeting booked with the surgeon to discuss the removal and testing of the new lesion.

I guess I'm at the start of a potential devastating road but very interested in talking with others going through a similar thing.

It's been a while since you've posted. I hope you are doing well.

Kind regards,

Iwan