Good Morning, I am new to the forum. I have recently been diagnosed with PVL. I have stage 1 precancerous. Has anyone had it removed at this stage or just monitored? Right now I’m being monitored every 3 months. Also was wondering what worked for the pain you experience in the mouth daily. I am open to home remedies. I’ve read an anti inflammatory diet and taking probiotics. Was wondering if this helped anyone. Thank you so much for any input.

Oral cancer only hits about 1/10 of one percent (if my math is off, please correct me) and from what I've just read, PVL is also quite rare and highly likely to turn cancerous.
My cancer started with leukoplakia but I never heard that it was PVL. In your case, if you didn't hear anything about HPV, then my best guess is that you will need to avoid alcohol (and smoke in either case).
Find an MD who is expert in leukoplakia. It sounds that you have a realistic risk that this will turn to oral cancer.
I've tried to sent you a private message but I couldn't.

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!!!

Hello PAD,

I have been down this path that you are on. It has been a 9 year journey and 5 CO2 ablations that has progressed to carcinoma in situ that I am getting excised this week. There are a few things I have learned:
a) The grade doesn't really matter, as people cannot really agree on classification. I started with severe dysplasia that was removed, then multiple moderates. These all have the potential to change to SCC.
b) It hurts and I haven't found a solution to it. Over the years, I have gotten used to it.
c) You will need to stay on top of it. I have been monitored closely during that time. My last check with my doctor was 2 months ago and then a sore that wouldn't go away.
d) I haven't gotten an answer of "how do I manage it?" and "how do I prevent it?"

I'm sorry you are dealing with this condition. You learn to stay on top of it.

Thank you so much for info! I am learning to cope and getting used to daily pain. You have to be your best advocate. I will continue to be pro active. I am pleased with my Oral Pathologist. She will keep a close eye in certain. Right now I’m on a every 3 month watch. Appreciate your input.

I’m sorry it took me so long to reply. Thank you for your response. I have read about HPV possibly being the cause. I’m 59 and have never been diagnosed with it. But, that has not been 100% proven cause. It is a speculation. I am seeing an Oral Pathologist and so far feel confident she is knowledgeable. I will stay on top of this for sure. I appreciate your response.

If you find a need for an expert (for a second opinion for example) in leukoplakia, one of the leading experts in the field works at Dana Farber Cancer Inst. and the associated Brigham and Woman's hospital.

https://hsdm.harvard.edu/people/sook-bin-woo

Thank you so much! I greatly appreciate your help.

Hello,

I have been diagnosed by PVL as well. Im female 37 and it started 3 years ago during pregnancy. I also have oral lichen planus and a dry mouth.
So far 2 biopsies have been performed and came back as mild to moderate dysplasia. My lesion is on the lateral tongue
Management protocol recommended was observation every 3 months. I am being seen by an Head and Neck surgeon at a cancer center.

Im very thankful to this forum that i have been able to connect with a few other PVL patients. considering its so rare, not much info available.
My observation, with pain is the pain is not from the lesion as such but I get canker sores around that area. So trying to avoid any irritants has helped.

Thank you,
Vamsee

Hello,

I was diagnosed with PVL 8 years ago. I underwent yearly laser ablations and scalpel excisions of the affected sites. I never had any dysplasia from the mulifocal yearly biopsies. Everything seemed to be under control...But, I developed a periodontal infection near a tooth where the Leukoplakia was present. The tooth was pulled, but the infection never healed and I was eventually diagnosed with SCC.

PVL is an insidious disease that nearly always transforms into cancer. My advice is to be aggressive early on and remove the Leukoplakia lesions on some timeline - mine was annual.

There are several publications that I have seen online that focus on PVL, but you are mostly confined to the seeing only the abstract unless you pay for the paper.

Unfortunately, because it is so rare, there hasn't been much research into it.


I wish you the best.

I wish you the best with dealing with this. I’m slowly coming to terms with it and figuring out what I can and cannot have. I never smoked a day in my life I’m 59. I decided to stop alcohol all together. I only drank socially but, felt if this will help why not! Eating is a challenge as the best food with no pain is pasta, and soups. I bout an instant pot and most of the time the food comes out very soft and tender.
I’m nervous as I see my pathologist on the 14th. For a recheck. Im on an every 3 month check.
I’ve babbled on but, please know I am thinking of you and try to stay positive! I babysit my granddaughter 5 days a week and I won’t let this interfere with my true happiness I have when I’m with her.
Stay well and I will check back after my appointment.
Sincerely
Peggy

Hello, I’m sorry you are dealing with this . I’m recently diagnosed with PVL. How did they remove the leukoplakia once a year? And, who performed the procedure? Dentist, ENT ...,?
I wish you well and hope you can find comfort.
Thank you
Sincerely
Peggy

I’m so sorry I didn’t respond sooner. Thank you so much for your time and kind words. Finding a few people who have this so, slowly getting information. This site is very helpful. I check in every so often to see if there is any new news.
Thank you
Sincerely
Peggy

Hello.

I was just recently diagnosed with PVL too and am getting checked every 3 months. I am pretty scared...

Hi,

Apologies for the belated reply.

A stomatologist removed the lesions.

I had my teeth cleaned every 6 months by my dentist, who kept track of the lesion growths.

I would suggest getting the suspect areas inspected by a specialist every quarter. Do mot wait on this.

Hope you are doing well

I’ve had it removed by ENT/head and neck surgeons. It’s certainly an annoying disease. It’s really frustrating that there’s no consensus nor stuff you can take for it. I have researched and researched and have gotten multiple opinions.

Just frustrated that the tongue isn’t as mobile after the last removal (it had progressed to carcinoma in situ and all left lateral tongue) and now I have another spot...

Good luck.

I recently had Dana Farber look at another developing spot of leukoplakia. There is discussion of a planned treatment to use a drug used for skin cancer (I believe it is Fluorouracil). I understand that this is new and has not been done much if at all in the past and is not suited to many surfaces, but in my case they will use something (I believe it is a dental dam or similar) to keep the drug in contact with the tissue.

Some people may wish to ask their medical providers what, if anything they have heard of this.

Please note that I don't know more details at the moment, and will provide more when I get any.

Im sorry you are having to deal with this. I just had my 3 month check and all is the same. So, that is good news. Plan is biopsy every year. For some reason I have been developing yeast infections in my mouth to add to the pain. Has anyone else have this issue.? Periodically I have to be on a 10 day med to get rid of it. I’m getting used to the pain and finding food that doesn’t irritate!
Best of luck to you all! Stay well!
Peggy

Hello, can I ask how long from being diagnosed to it turning to cancer? We’re you ever precancerous for awhile? So sorry you are dealing with this. It is difficult at times and frustrating as to the lack of information. Thank you for any input.
I wish you well!
Peggy

Peggy: Regarding your question of "how long", when first diagnosed with leukoplakia it took several years before it went to cancer (and it was always called, in my case, leukoplakia-I first heard of PVL from you). If your experience is like mine, steady monitoring with any necessary remedial work will keep it under control. My leukoplakia was first diagnosed late in the last century, maybe 1998 and the first cancer was found in 2003.
Unlike you, I've never experienced any mouth pain (except after the 2015 operation, of course).

Thank you so much for your reply. I truly appreciate it. I am being closely monitored! I wish you best.
I will keep you posted with my progress. And if I find anything that has worked for me.
Sincerely
Peggy

Hello! Is it possible to get rid of this completly?

I have been told no by my pathologist. You will have good and bad moments. I’m going through a bad right now. Lots of discomfort. I see Dr. today.
I was told it is a progressive disease. Hard to keep away. Do you have a lot of pain? If so, how is it being treated?
Good luck to you.