Hello All,
I have been diagnosed with oral leukoplakia with mild dysplasia on the lateral tongue.
Im seeing an ENT at vanderbilt ingram cancer center. My doctor thinks surgical excision is not necessary as I don't have any risk factors and dysplasia is mild .
Im 35 years old and the lesions have spread in the course of the one year they have been discovered.
My concern is this is PVL as the lesions have spread in the past year.
Are there any tests to confirm that ? Is there a test for HPV as I am reading there is an association between PVL and HPV.
Also is there a higher chance of recurrence with Laser surgery as compared to traditional surgical removal ?
Thank you for your help.

Welcome to The Oral Cancer Foundations (OCF) online forum. Our site is made up of oral cancer (OC) patients and caregivers. We do not have medical backgrounds, years of schooling or patient experience. Answering specific medical questions (especially about non-oral cancer issues) can be more than we are able to help you with but we can try to point you in the right direction. I have a link from our main OCF site where it goes into detail about other non-cancerous issues like dysplasia and leukoplakia. These types of sores usually do not turn into cancer but they will usually reappear when removed. Im sorry, I do not know what PVL is???

There are oral HPV tests but they do not provide actionable info and are not recommended. From what I know these tests are a waste of time and $$$. They are histopathology tests that look at individual cells and their dna through pcr testing from a biopsy sample. That is very different from a screening kind of test.

I would suggest asking your doctor your questions. I also suggest obtaining a second opinion from another treatment facility.

Main OCF Site, premalignant lesions

Hopefully what you have will remain non cancerous. Best wishes!!!

Thank you very much for your reply. Sorry for using the abbreviation, I meant Proliferative verrucous leukoplakia(PVL).
My concern is, if this is Proliferative verrucous leukoplakia, are there any early tests done to identify that.

Also wanted to know if any other members have had extensive leukoplakia with mild dysplasia change to malignancy and what is the time from for progression.
I am worried this is on the side of the tongue, which I understand is a high risk site.
Also since I am seeing new lesions. This started for me during pregnancy when I was pregnant with my second child in late 2016.
My doctor did say that pregnancy is a high state of inflammation. Was hoping to hear from members with similar experience.

I am very sorry but I know hardly anything about leukoplakia and dysplasia besides what Ive already posted. OCF does have a few members who have had dysplasia turn into cancer. Off the top of my head Im sorry but I cant remember the timelines of the people I have in mind. Most often dysplasia does NOT turn into cancer. I know you have a issue with the dysplasia/leukoplakia, but to me, I see you as very very fortunate person that you do not have cancer. Im sorry but I cant think of any member who had their leukoplakia turn cancerous. Almost all of our active members here are oral cancer patients or caregivers. We have very few members who have leukoplakia or dysplasia. I cant think of any who are currently active on our forum. I know there are some so hopefully someone who has been down a similar road with their leukoplakia or dysplasia turning cancerous will respond soon.

Besides getting a second opinion, its a good idea to keep an eye on your mouth sores yourself. We all need to be proactive and be our own best advocates. Dont check it every day as that tends to lead to checking it many times a day. Once a week or every other week is enough to notice any changes. If you would notice a change, make an appointment right away for your doc to do a thorough exam.

I have had leukoplakia with mild dysplasia that turned to cancer. I was told that only about 10% becomes cancerous. It was biopsied for several years, always negative but the white spot kept returning. It was finally removed surgically and just in time since it had turned to stage 1 cancer which was eliminated .I've send you a message. .

I have been dealing with large leukoplakia on my lateral tongue for the past couple of years now. It has been biopsied a couple of times and came back as mild dysplasia both times.
I see an Otolaryngologist at the Ingram Cancer Center at Vanderbilt in Nashville TN.
My doctor believes it is a low risk leukoplakia and gave me the option to either surgically remove it or continue to monitor it every three months. Right now it is being monitored every three months.

I also visited Dr Sook Bin Woo at Dana Faber and she diagnosed its a proliferative verrucous leukoplakia.
She said surgically removing it was my choice but there was an 70% chance it would all come back. Since PVL is a high risk lesion she also advised me to monitor it.

I am torn between surgery or monitoring it. I discussed with my doctor if there is any flip side to surgery and he said nothing major outside of the short term discomfort.
Since there is a difference of opinion, I wanted to consult another oral lesion specialist. I am willing to travel anywhere in the country.
Would appreciate recommendations of doctors who are specialists in the field of oral lesion management.

Also any advice on how to approach this decision making problem is highly appreciated.
I am torn between whether to go for surgery - best case the lesion goes away forever or worst case it all comes back
OR
Continue to monitor it.

Also is scalpel surgery better than laser? My doctor is leaning towards scalpel surgery as it gives the pathologist the opportunity to study the lesion.
I wanted to know if one way or other(laser or scalpel) affects recurrence in anyway.

Highly appreciate your inputs.

Thank you.

I had leukoplakia on my lateral tongue for three years, don't know if I had dysplasia. When it first popped up I had it biopsied and it was negative for cancer. After consulting my dentist and an oral surgeon I ended up with an ENT who recommending monitoring and said only 1% turn into cancer. Well after 3 years I developed a sore spot and had my dr biopsy the spot. It was SCC cancer stage 1. I can't tell you what to do, but monitoring, rather than subject yourself to what may be unnecessary surgery, may be the way to go. Also, I agree with having regular surgery rather than laser so margins can be examined. Does dyplasia present make it more likely for cancer to develop? Keep up the doctor visits and if anything changes, however minor, get in to your dr.

Hi- I just had the same type of Leukoplakia patch removed. I, too, could have waited but was glad I had it taken care. Recovery hasn’t been bad at all. I am happy to answer any questions about the procedure. Mine was biopsies and came back with mild dysplasia as well.

My husband’s dentist noticed a small leukoplakia on the underside of his tongue during a routine dental appointment. She sent him to an oral surgeon for a biopsy; the report (by a lab that does only oral pathology) came back as moderate dysplasia but warned of a possible “skip effect,” meaning that there could be bad cells in areas that weren’t sent for study. Because cancer had not been diagnosed, he scheduled an excisional biopsy of the whole thing with a well-regarded ENT, who removed it a month later.

He was one of the unlucky ones whose dysplasia turned to cancer; the excisional biopsy (which got it all) came back as SCC in situ, with a small bit superficially invasive. He immediately switched his care to an oral cancer specialist at Johns Hopkins, who determined that no further treatment was necessary and followed him closely over the next few years. He’s now 12 years out and is regularly examined with a VELscope as part of his dental care; he has been referred to the oral surgeon a couple of times for what turned out to be routine mouth irritation.

I can’t speak to the differences between laser and scalpel removal, as laser was never discussed.