i was diagnosed with both and had a biopsy done to reveal severity of both on my gums and the lateral side of tongue. He removed it all and it was negative for dysplasia. About 2 years later at the followup, I told him it was coming back and hurting and he prescribe me meds which didn't help much. I think it was a topical steroid. He told me to just keep an eye and I had nothing to worry about that it was rare for anything to turn cancerous... I trusted him. Now, It is coming back with a vengeance 2 more years later and even more painful. This time even when I talk. He prescribed me an antifungal for preventative measures, another steroid topical and something else. A steroid mouth wash, I believe. I discussed with him about the research I did and again he told me its very rare but we are doing another biopsy this week. Sigh I know it's not THAT rare, as I see quite a few people talking about lichen planus and the transition into cancer. I'm so scared now I should have gotten a second opinion much sooner. I am also highrisk HPV positive and have smoked in the past on and off socially since I was 14. I am now 34. This white patching has been around since my early 20's I quit social smoking about 5 years ago. It really wasn't even a pack a day, but that probably doesn't matter much in the grand scheme of things. God, I haven't even begun to process the price. It will be about $700 for the biopsies just like it was 4 years ago. They told me no one will take insurance both dental and medical?! I can't begin to afford sedation so i'll have to take a valium or 5...hundred. This guy was condescending and just kept saying that I don't know what he knows and to not believe everything you read online. So it goes... I feel like I should maybe go to an ENT or Oral surgeon who specializes in dysplasia of the mouth. I don't know, what do you think? This guy I noticed specializes mostly in superficial things, crowning, fake teeth, etc

I should add that the pathology report for the biopsy goes to the same place that most oral surgeons use so I don't know how practical that would be? It goes to the University of Gainsville pathology dept. On the diagnosis it said I had leukoplakia but in part of it, it said I had lichen planus as well. The doctor seems like to use these two interchangeably.

Hello, thought i'd introduce myself. I told my short story in the symptoms and diagnosis forum, where I asked for some advice. I'm so scared so any advice would be appreciated. Nice to meet all of you. I have looked around quite a bit before joining and I like that everyone is very blunt and to the point.

Also, my heart goes out to all of you who have been diagnosed.



FROM ADMIN----- Your posts have been combined to provide clarity to other members

Hi Brie,
Welcome to OCF! It is nice to hear some prefer the the facts without the powdered sugar all over. It may not taste as good but it is generally better for your health. Then again there are those who do better with more sugar in their systems. Each person is unique in how they deal with the entire process and beyond.

Hang here as there is lots of experience with nearly all things that can happen.

Don

Brie,

You don't have to answer if you don't want but, how do you know you're HPV16+, guessing a pap, but no worries if that's too personal.

JFYI if it lets you breath any easier, most HPV+ induced SCC tumor/lesions primary location distributions are 35 % for oropharynx, to 25 % for hypopharynx, 5 % for larynx, and 3 % for oral cavity. Given what describe you would have to be statistically extremely rare in an already rare group...

You should definitely be consulting a ENT, possibly at a CCC if possible.

[quote] They told me no one will take insurance both dental and medica[/quote]

This mean you are uninsured? Otherwise this person you are dealing with has no clue how to get these tests done for just a co-pay. Go see an ENT.

If uninsured, run out and sign up for the ACA? It may not be the greatest thing in the world(esp in florida).

Take care and best of luck with your biopsies.

Hi Brie,

A very warm welcome to you!

Check you PMs. I sent you one about dealing with Fear as you go through this.

Bart

You should see an ENT who specializes in oral cancer.

Medical insurance covers biopsies, not dental.

At this time HPV+ has not been proven to have jumped from the female area to the throat area.

If you are still smoking.... QUIT NOW! There are known cancer causing additives in tobacco and the smoke. Why continue to put yourself at risk for your situation to turn into a major health condition? Its not worth it! You have a pre cancer that sometimes stays how it is but often it will turn into cancer. You dont want to always have your smoking in the back of your mind as to why you became a cancer patient.

Hi everyone and thanks for the welcome and information. Christine, I do have medical insurance but they are saying they don't take blue cross blue shield for this type of biopsy. I am confused by this and will do some calls to other places tomorrow. This is stressful, let alone money wise. Also, I quit socially smoking, not even a pack a day, about 5 years ago as stated in my intro. It came back with a vengeance even after I quit. But again, never a heavy smoker, very light in fact and I don't know if that has any weight. Sorry that wasn't too clear. The oral surgeon did a biopsy of several sites already and they came up lichen planus as well as leukoplakia. He says the bulk of it is due to trauma or the immune system. I don't have lots of money and literally fighting for help from my mom to get a second opinion but she keeps saying to stick with him b/c a biopsy anywhere will be sufficient as long as it goes to professionals in a pathology lab, which it does.

Briank, yes a pap.

I have been dealing with this on the side of my tongue and inside of cheek since I was in my early 20's. It has been over a decade and it only started hurting in the past few years. I don't even know if i can safely say this is smoke related.

I think I am going to be forced to get this done by the same oral surgeon....I will make some calls though...

Christineb, if you don't mind me asking, how long did you experience the pain from the white patch on your tongue and was it lateral on the side and was it lichen planus or leukoplakia? How long have you had the patch, pain or not? Was it painless to begin with? Sorry for so many questions, but very interested to hear.

Brie,

I don't want to scare you more, however.....I'm going to be blunt. My lateral tongue cancer started as a painless white leukoplakia. My dentist sent me to an oral surgeon for biopsy. 1st came back negative, just leukoplakia. We watched it and checked at 3month internals. At 9 months, biopsy #2....this time it was lichen plans. We continue to watch if for 4 more months.... It started hurting and looking more "round" in shape. That lead to biopsy #3. That time it came back positive for SCC (cancer). So......all of this to say....if it is still there, be diligent to get it biopsied. BUT REMEMBER our mantra here at OCF.....Its not cancer until the biopsy says it is. Keep an eye on it and get to an ENT OR oral Surgeon that takes you seriously. Best of luck and keep us posted. We are here for you and have lived through this.

Alicia

I am very upset now, because of the fact that my oral surgeon wasn't insistent on keeping a very watchful eye. Instead he was more insistent that i was too young and it was very rare. I am scared that it's so late in the game now. 4 years ago biopsy was done, 2 yr follow up it grew back with slight pain, next two years spread more with more pain. That infuriates me because I keep on top of things but i also want to trust doctors and expect them to know their things. Thank you for your information. I am going to see the ENT.

This cancer knows no age so do be watchful and always seek a professionals opinion when in doubt. From what you have said I would probably seek out another oral surgeon.