I have been diagnosed with a condition called Proliferative Verrucous Leukoplakia. The information I have so far is that it is a rare (1% of the population) aggressive form of Leukoplakia which turns to cancer easily and frequently. Four biopsies have been done so far. The first showed pre cancer/surgical removal recommended; the oral surgeon did nothing. The second biopsy by another oral surgeon showed squamous cell carcinoma which extended beyond the edges of the sample, it had spread. The third, performed by an otolaryngologist cancer specialist, was surgical removal of all the cancer at the time, which included the removal of two teeth and part of my lower jaw bone; good news the cancer had not invaded the bone. The fourth was removal of a piece of gum that protruded after the surgery; wasn't really worried and not really surprised that is was not cancer. From the time of the third biopsy to the last biopsy the leukoplakia had spread .5 cm about .2 cm wide from close to the area of the cancer around an existing tooth. Currently the length has doubled, spreading around the other side of that tooth. The ENT took measurements at the time of the fourth biopsy and since it appears to only be leukoplakia at this point I will wait until my next appointment unless I notice a change like in the past.

I found articles on the internet and studies on the subject of PVL. Although my Otolaryngologist/ENT seems very knowledgeable about the condition because I am one of five patients he has with PVL. He suggested that any information I could find on the subject can always be helpful. I tried to contact a couple of the doctors who authored the articles/studies, but none have returned my calls. I was asking for information on their knowledge of the subject and on any current studies being done on the subject. No luck so far. Does anyone else have PVL and/or information about the disease?

As is apparently common with this condition, I am female, never smoked, have only occasionally had a drink during my life, no HPV, no Epstein-Barr, or any other affliction other than a mild hereditary heart valve condition. However, I am younger than the typical age by 10 years. I already consumed a high vegetable/rarely any meat type diet, so I already had a high beta carotene/Vitamin A diet which my doctor suggested at this point I couldn't have too much. I am an avid runner, walker, hiker, golfer, etc. Go figure!

My ENT said if I had any vices the other doctors would have payed more attention to my symptoms and diagnosis. A chain of events driven by luck, divine guidance, or something to that effect is what I have to be thankful for only losing two teeth and piece of my jaw bone. As of right now cancer free for the time being!

Welcome to OCF! Im sorry you have gone thru so much and yet are still in the "watch and wait" phase. Hopefully your PVL will not turn into anything more serious.

Where are you being seen?

Wow, that is a rare card to draw. Welcome to the club my dear, glad you found us, sorry you had to

What stands out in the articles I've read about this uncommon type of Leukoplakia, is it's highly likely for malignancy and chance of recurrence. Scary stuff.

The best advice in Cancer is to get the "Absolute Best Medical Advice Available To You". In Indiana, I think I'd reach out to Dr. Paul Zitterbart, DDS, MSD, MPH, or Dr. Jack Schaaf, DDS, MSD, at the University of Indiana's School of Dentistry.

Both of those gentleman are well respected (I'm more familiar with Dr. Schaaf due to his extensive work in various Oral Medicine Associations) and should be able to answer your questions about what's known about your diagnosis.

Here's a link https://www.dentistry.iu.edu/index....d-radiology/oral-diagnosisoral-medicine/

Hope that helps, keep up the good fight!

E.

Thank you so much. It has only been 8 weeks since the cancer was removed and the leukoplakia returned after 6 weeks. The ENT has seen it and although he was concerned it obviously had not turned to more cancer yet. He took measurements of the leukoplakia and the knots on my jaw. My next appointment is at the end of July, but he wants me to call if I noticed any change or bleeding. The leukoplakia has slowly expanded. My problem is not knowing what is enough make the to call. I don't want over-react every time the leukoplakia returns.

IU Medical Health in Indianapolis, Indiana. The ENT is a cancer specialist with 4 other patients with Proliferative Verrucous Leukoplakia. He suggested that any information I could find on the subject can always be helpful since there is so little research information available.

Thank you for the vote of confidence. I wound up at IU Medical Health with an ENT cancer specialist. I will see him soon and I will mention these two dentists. He may know them or at least know of them since they are with the same hospital.

You may also mention Dr, Susan Zunt. She is cross trained in oral and maxillofacial pathology and oral medicine. I came across her as she has been an investigator in the world of xerostomia, a topic most of those here wish they didn't know the meaning of. But as someone whose peers made her the president of their organization (AAOMP) she is definitely highly regarded. While you already have a diagnosis, you may find her a useful contact as this plays out, or you have further questions about the causes of it all.

Thank you for the information. At least IU seems like the place for me. Even though it is 3 hours from home it seems like I am receiving much better care than most of the previous doctors. It also seems like a good resource for further information. I appreciate the help.

Frankly were it me I'd have the entire chunk removed with good margins and I would be in there weekly until he did. HUGS and best of luck.

The cancer is gone. The PVL has returned. I was supposed have an appointment July 29, but I am now going back July 8. I knew the PVL would behave this way, but I had hoped for more time between recurrence. At least when I contact them they take it more seriously than I do. I was expecting confirmation that waiting until July 29 was acceptable, apparently not! Thank your for your support. Life is an adventure!