Hello, I am new to this and hope I am doing it correctly. I have had 2 biopsies since Oct. of last year. The second one confirmed proliferative verrucous leukoplakia with moderate epithelial dysplasia - what a mouthful!!
I am just coming to terms with this diagnosis and would like to find someone to talk to who has gone down this road or is in the midst of treatment. I am getting a second opinion tomorrow morning but would still like to hear from someone who is actually experiencing this rare disease.

I am sorry I cannot offer any help with this particular disease. I would like to say welcome to the boards. There are a lot of wonderful people here and I am sure someone will have some informaion for you!

I do not see that you have posted since 2009, but I thought I would give this a try. I have also been diagnosed with PVL which turned to Squamous Cell Carcinoma. It was all removed in April of this year along with two of my teeth and part of my jaw. It has returned over the last few months. I am having surgery next week. I too, am interested in anyone else with this condition, but since it is so rare there are very few of us around. About 1 in 7.1 billion.

aotagandco

Sorry to hear about this recurrence .
My mother has SCC and she is not HPV positive. Her cancer started in the lower left rear jaw. Her first surgery was the removal of part of her jaw and her recurrence is below the same jaw in the neck area.

My mother was diagnosed with Leukoplakia also and this is what we are linking her cancer to. My mother has always had regular dental checkups and has always cared for her mouth and teeth.
She suffered with Gingivitis also. Her gums became so bad that her teeth started to loosen up and fall out until she had no choice but to pull them . That was something she hated to do was to loose her teeth. As she started to wear her new dentures the rear left jaw became inflamed so she couldn't wear them. All the while she had a tumor and didn't even know it. She had been to several dentist along the way and not one of them noticed this tumor. She even developed a foul breath but it was constantly being diagnosed a Leukoplakia and Gingivitis and treated as that. I don't doubt that she did have the Leukoplakia but we "my family" do feel like this was the cause of the cancer developing .

Next thing we knew was her ear started to hurt and off to the ENT where she was diagnosed with SCC. She is now battling this horrible disease.

I want to wish you the very best with your surgery.
Heidi

Here is some info from the main OCF pages. This can help you to understand that many times a per-cancerous condition does not develop into cancer but other times it can. There are a million variables that come into play so its not possible to know who will end up with cancer down the road and who wont.

Pre-cancerous lesions


Best wishes!

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.

Hi... I have to be honest with you those of us who are here who have no precursors for this disease (and sadly there are a lot of us), don't know what has caused it. I am one of them. Now I must say that the second ENT who looked at me said I may have leukoplakia - the specific name he didn't give and most importantly it didn't matter at that point as it was SCC by that time and needed to be treated. Leukoplakia seems to be a common factor for some of us, and also chronic irritation.

Regardless of all of that it needs to be treated like the cancer it is. It sounds to me like you had a pretty extensive surgery, which can be daunting - there are a few people here who've had the same surgery. Usually (I'm sure you've done your homework here) surgery is the first line of treatment then depending on the circumstances there is often a follow up with rads and chemo. As extensive as your cancer sounded - I am wondering of they also did a neck dissection as this is usually the next stop for the cancer after the mouth/oral cavity..

If so it's a good thing. If not I imagine they are doing one this time out. This being a recurrence I would also be wondering if they are considering rads and chemo?

hugs and welcome.