Can anyone give me information about Proliferative Verrucous Leukoplakia? My husband was just diagnosed with this after a biopsy. Oral surgeon says it's a rare disease that causes precancer cells that turn into cancer left untreated which is probably what he had on his tongue before it turned into cancer???

Brian, any info?
Can't find anything out there and desperate to hear asap.
Thanks,
Debbie

Leukoplakias fall into different groups, those that are the kind you can watch and wait for awhile, as they have a low transformation rate into cancers (around 20%), and those that are more likely to develop into dysplasias, then cancers. Unfortunately while they do not always turn malignant, verrucous leukoplakias are in the later group, they are definitely considered precancers. Read that sentence again. They do not always turn malignant, but need to be dealt with since they are considered PRE cancers. Verrucous leukoplakias make up about 25% of all oral leukoplakias. The other risky type is called erosive leukoplakia and it has a much higher rate of transformation to malignancy, so that at least is the good news out of the two types that can truly be considered precancerous

Brian,
Thanks for your quick response. We were able to pull some information from the seaching here on OCF and a friend found some more. Dan's oral surgeon was honest to say that he had not really heard of this and had to look it up before calling Dan. We have a consult with him this Friday. I was hoping they would go ahead this Friday and remove the spots, but I guess the oral surgeon wants to take a look first. At the biopsy three weeks ago, Dan really thought this was dead skin from the graft, however, the oral surgeon must have saw something because along with the spot Dan felt way back on his tongue, the oral surgeon sent the spots around the graft away, too. That is what came back as PVL and now we can see them on Dan's tongue as white patches so they have definitely grown. The OC also gave Dan a number to call at dr. at John Hopkins who is setting up a study in the spring to try and look at genes or whatever to try and determine what is causing this...there are only three others at this time. I think I fear how much tongue they will have to take to keep cutting these out. As he has three since his original surgery three months ago, they seem to be coming fast. Do you know if they also come up other places in the mouth, or just the tongue area?

Anyway, hopefully, after Friday's consult, they will get him in and remove them quickly. We are quite fearful about amount of tongue and future speech as Dan is a salesman and a church drama director. I did read something about cryosurgery...do you know if that is done and if it is successful? Also, as much as we wanted to avoid radiation, would that be at all helpful in this case? Of course, we will be asking all these questions on Friday to the OC.

Thanks again, Brian, and any other info you have would be greatly appreciated.
Debbie

Thanks Brian
Your post gave me the confidence to go back to my doctor and make him have good look! I am contacting the head and neck clinic tomorrow my next appointment is not until the 22nd dec, they are doing "watching and waiting" since my last lazer treament last May, the lab results didn't get a clear margin around the lesion they removed, so they are hesitant to remove anymore of my tongue as they say this time will have to be a graft and they do not know how much of my tongue to remove, but you have given me the confidence to insist that the red patch is much bigger and now is very sore so I will keep you posted on my new found insistance!
Thanks Helen

Debbie, do not let me scare you, but you have to understand this. The conversion to malignancy can happen at any time. As you are well aware, once that happens, it is deadly and moves quickly. The further along it is when that happens the more tissues have to be cut and removed. The oral surgeon has said he isn't up to speed on this. He doesn't know if it is going into full-blown cancer mode. Will it happen this week, next, or next month? No one knows. These thoughts should be waving red flags in front of you. Waiting for a consult with someone who doesn't know what's what (had to look it up in a book) isn't moving your husband towards a definitive treatment plan. Wouldn

Debbie,

I agree with Brian 100%. Get your husband to Johns Hopkins ASAP. I regret not taking Heather there in the beginning, instead of waiting until she had the recurrence. I wouldn't want you to have the same regrets. I know I am probably causing you to panic and I'm sorry, but time really is of the essence in this case. The best of luck to both of you.

Rainbows & hugs,
Rosie