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.

My oral surgeon was insistent that my leukoplakia was "no big deal." In fact when I saw him in November 2011 he didn't even take a biopsy because he said he didn't want to aggravate it. Then, in September of 2012 I find myself having a partial glossectomy for full blown tongue cancer. Now, here I am in January 2013 with a recurrence and a full glossectomy in my very near future. I wish I had not been so trusting with my oral surgeon, but I regarded him as "the expert" and went with what he said. It makes me mad, but there's nothing to do about it now. I have of course left him in the dust and am getting my treatment from real doctors now. A hard lesson learned!

Brie, my white patch did not hurt at all. Thats why I ignored it. To me it looked just like a canker sore and I just figured I was over stressed thats why it didnt get better. It was there for a few months before I went to my family doctor for what I thought was a sinus infection. By taking a look at the white spot he told me it looked like cancer. Of course that was an educated guess as only thru a biopsy could that be accurately determined. Im lucky to have a good thorough family doc or my cancer would not have been caught until much later.

both your oral surgeons have out of date information. OC has in fact moved out of the standard demographic (old men, heavy smokers and drinkers) and can now be found in the VERY YOUNG. we have had several younger members here - as young as 18 - none of whom were smokers or heavy drinkers. There are also a newer demographic of people our age - 30s 40s who are healthy non smokers - non to social drinkers who have had a similar story to yours. Mine is one of them. I'm a vegetarian for heaven's sake. Anyway diligence is the key. call blue cross - go through an ENT - NOT an oral surgeon as you should be monitored by an ENT this is their field. An oral surgeon can likely do the biopsy and potentially removal of the area - however... this cancer can be aggressive and move quickly. This often requires a more aggressive approach - most (though not all) lichen planus/leukoplakia related cancers aren't HPV + This means a few different things.
Firstly - drs tend to be more aggressive with this type of cancer. (HPV + cancers respond very well to rads and chemo only - often surgery is not used except where the tonsil is involved)
So usually depending on your history - and the size of the area, and aggressiveness (differentiation) of the cancer an ENT will possibly remove the area in question (rebuild it if necessary - depending on size) an remove lymph nodes too. At least an experienced ENT who has dealt a lot with Oral cancer will (or should)- that being the case - an oral surgeon cannot do this surgery. He or she could only do part of it. Which may give you a false sense of security if you are told - the cancer is gone.
secondly : often the first line of defense with non HPV OC is surgery! then possible follow up with rads and chemo.

This cancer can seed to the nodes and NOT be picked up on in a scan until it is a reasonable size.

therefore my suggestion would be
SKIP THE ORAL SURGEON.
Get a referral to a top notch ENT who has dealt with oral cancer a lot. This will also solve your blue cross issue as it would likely be considered a medical issue - NOT a dental one.

I know it is different in Europe - but in north america - oral surgeons are considered dental for the most part, but an ENT is a medical/specialist DR. I think they have two different governing bodies.

If you have a knowledgeable ENT monitoring you then you skip the middle man and will be in a position to deal with anything right away rather than be half way through the process and have to be referred to someone else should something more insidious (like cancer pop up)

finally as everyone has said - it isn't cancer until a biopsy says it is. But it is good to be in a position to deal with it immediately if you do get bad news.

welcome and good luck - PS I know money is important but your life is moreso. Don't delay doing what you should. Saving money is only useful if you will be around in the long term to spend it. hugs

My leukoplakia of many years turned to SCC.
I had many negative biopsies over that time, continued to smoke and ignored the warnings.
Biopsy in 2006 came back positive and guess what... I stopped!
2 weeks in hospital having major surgery got it out of my system.
Please get that biopsy ASAP.

[quote=Brie79]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. [/quote]

Hi Brie,

In order:

FIRST: Don't fret about what cannot be changed. In my own case, I went to see my Family Physician about a large lump I'd discovered under the right side of my chin 6 years before I got diagnosed. He sent me to see a prominent ENT here who took many samples via thin needle biopsy. I never heard back, so I went to see what the story was and was told not to worry about it. So, for the next 6 years, I didn't.

Then, after 6 years, I started getting an ear ache that seemed to be linked with the location of the lump and went to see another ENT on my own. This one said he didn't know what it was, but that I'd better get it removed at once and let the pathology lab tell me what it is. What it was, was Stage IV oropharyngeal cancer.

Stuff happens, if it doesn't help you get cured, it's not worth the stress of getting upset about it. STRESS IS NOT THE CANCER PATIENT'S FRIEND!

SECOND: I sent you a PM earlier on the subject of dealing with Fear. The only thing I'll repeat here is that Fear of the event (any event) is always worse than the actual event is.

THIRD: Try to let go of you fury, anger (like Hate) only makes a bad situation worse. It is always very corrosive to the vessel that tries to contain it. It's another form of STRESS, and STRESS IS NOT THE CANCER PATIENT'S FRIEND!

The Cancer, on the other hand, loves stress and anger, and thrives in an environment where it is cultivated. So for now, forget about right and wrong, and concentrate on calming your mind and beating the cancer.

And eating to fuel your recovery, and drinking water to flush the by-products of your successful fight!

I am dead serious when I say, find something that makes you happy, and focus your free thoughts on that. Fear and anger are but mind-states, and they are particularly YOUR mind-states. With a little practice, you can learn to change your mind-state to one of happiness. That's something you very much want to do.

Best of luck to you, Brie! We're all pulling for you and you are most assuredly not alone in this!

Bart

Brie,

I'm working with the University of WA's School of Dentistry's Oral Medicine program who's clinic is open to the public. The former Dean of Oral Medicine is really well known and specializes in patients with chronic dysplasia. His work with fluorescence and early detection is well respected.

Depending on where you live, this may be an option for you as many of these schools have special programs for those without the means to pay, and generally use the most current screening and treatment protocols.

Keep your chin up

E

Hi Brie,

All the fear and anger are normal feelings, its good to let them out and let them go. Don't let it build and fester or paralize you into depression. You need is a strong confidant, someone who not judge you and who will let you say it all once no matter how it might come across. You need to protect your energy and your time. Focus on being conscious of how you feel in your skin, I find that especially in diffigult times like these that being surrounded by friends who can make me laugh even for a moment, I can feel my whole body reenergize. Granted it took me a few months to even smile again. A really funny movie might help give you a break.

Get an ENT surgeon with a lot of experience that will talk you through any question and prepare you for the next step. I second Sheryld! You are in good hands here!

Sophie

Hey Brie, I really support your push to engage a doc you trust. The purpose of the biopsy is peace of mind -- peace of mind that you don't have cancer (likely scenario), or peace of mind that you found the cancer and can now begin the fight (unlikely but vital scenario).

A doc you don't trust can never give you peace of mind.

Hugs,

Lynn

Not sure where you are, but Blue Cross has covered much of my stuff. Copays and deductibles are a pain, but they ARE covering some. Try a better doctor. Hugs. This is a scary journey, it is okay to cry a while and let it out, and then pick yourself up and tackle the next step. One step at a time.

Thank you very much for your all your replies. Bare with me because I am on a high dosage of percocet after an un-sutured biopsy...I had to stick with the same Oral Surgeon because of many different set backs I won't get into. I am going at this alone. My mom is the only one I have and she lives out of state and is not in good enough health to visit by plane.

So, update thus far. I will be 35 in may. I have been suffering from lichen planus/leukoplakia and odd random sores on and off for years now, since I was in my very early 20's. It was never painful until a few years ago. I was biopsied 4 years ago and it came back negative, then it grew back over the years very extensively and fast. I just had another biopsy done and 5 days later, it was an utterly incredible relief to find out it was negative, but the report said that it needs to be viewed as suspicious and to keep a close eye with repeat biopsy if it returns, which I know it will. I ALSO find myself wondering if the specimens were tested right, put in the right dye etc. because it came back so fast, only 5 days. The pathology dept is in University of Florida and I find myself wanting to talk directly to this pathologist. I know that cancer can hide in different spots and biopsies can come back negative a lot. I keep worrying it's not a definitive answer. Like I should dig more...

The biopsy was taken on my right side of the tongue and my right side of the gums. Completely adjacent to the tongue occurrence. I also see it in random places where I had fillings and root canals. I wonder if that may be part or all of culprit. Irritation that can lead to cancer? Anyway, I believe something is irritating my tongue and cheek. That is my next step to look into. I have heard that it may be the certain mercury metal used in fillings...

Aside from all that I have a very worrisome issue. I know that you all have more important and pressing issues, but this has been really bugging me and I need to vent it off my chest. The biopsies were taken the early morning of Jan 13th and it is now 7 am Jan 19th. I went in yesterday to be checked because I am having SEVERE pain in the biopsy sights. Percocet only takes the edge off. My biopsy 4 years ago was sutured and not nearly as painful as this. i cant eat and can barely talk without a heavy dosage of pain meds. The oral surgeon said it was because It was an open wound without sutures and a big biopsy site. (The purpose was to test it and clear most off my tongue)He said some people take longer to stop feeling the pain but that it is healing nicely and then prescribed me stronger meds. This is day 6 and i am feeling this pain in my teeth and my ear. It is radiating like crazy. I feel like that's not normal. Should I trust what he says ?

Also, and i am really sorry this is so long, but I am wrapping it up now...I noticed that when i stick out my tongue, one side is higher than the other in the back and this worries me because I have heard of people saying that their ENT or oral surgeon noticed this and this led to a different biopsy and then a cancer diagnosis.

I just want this to be over already and I want to rest easy, but this pain and the raised spot all make me feel like I should go for a second opinion. I have a habit of being a hypochondriac and paranoid, so most people who know me, just brush it off as another "freak out" I say I am being proactive and it's not my fault that I have so many peculiar things that happen to my body. It is so hard to accept things when they don't feel right and to KNOW when you are just too worried or that your worry is warranted.

Again, i profusely apologize for this being so long and thank you for listening/reading. I really appreciate your kind support and advice.

Hi, Brie. You sound very self aware, a quality I admire a lot. Sounds like a big biopsy you've had! I had a lichen planus lesion removed from my tongue some years ago and experienced similar pain. After the anaesthetic wore off I was in such agony that I went to an after hours clinic where it took them hours to get in top of it. My point is that it can be the nature of the beast - there must be lots of nerves there. Mine stopped hurting after a shorter time than yours and it was cancer so I don't think you can read anything into the pain.

You are a very eloquent person and somehow need to establish a line of communication with your doctor, one that might enable you to trust him. My problem with my lichen planus was that it wasn't biopsied for a couple of years or more because the oral surgeon thought it looked bog standard ... until it didn't. I had reason to be disappointed in him but at least your doc has biopsied you.I think they do so as a last resort because it IS so painful.

When the pain has died down, and you feel better, maybe you can think about the matter of a second opinion. I remember looking online for a doctor who had written research papers on lichen planus and emailing him. It's a horrible condition when it becomes painful and I fully understand your frustration with it.

Hope the pain eases soon and some of the anxiety with it. I'm thinking of you and know exactly how you feel.
Maureen

I would definitely be asking for a referral to an ENT with experience in oral cancer. The pain you have is normal - tongues are very vascular and nervy. But I would still want it to be monitored by an ENT. Hugs, and feel better

I will definitely be following up with an ENT. I am really starting to get worried. The pain has barely gone down and I don't want to take these pain meds long term. I am starting to get scared that he left me with some kind of permanent pain. I usually heal so fast and well. I don't get this...

To give you better advice, a location may help. Seeing an oral medicine specialist in your area(not necessarily an ENT, as they are surgeons who usually want to cut).

When last I discussed patients with chronic dysplasia of the Front of Mouth with Dr. Edmund Truelove and Dr. Dave Dean of the University of WA (one of the top programs in the US) they vary in recommendations based on many factors.

For those with chronic, reoccurring dysplasia (lichen planus, leukoplakia, etc) they recommend a few different protocols (such as dietary supplements like turmeric, and even low dose chemotherapy) as having it removed every time poses obvious issues due to the frequency of occurrence.

Working with an oral medicine specialist (like our own Dr. Ross Kerr of NYU on the Science advisory board, a product of the UW's Oral Medicine program) from a respected program would be beneficial to you. They tend to see more cases and familiar with current treatment protocols, and the latest research.

Keep your head up and as previously stated, "it's not cancer until a biopsy says it is" so try to keep your stress levels down (difficult I know) as it will only weaken your immune system if you don't.

Hope that helps,

E

Alpaca, why thank you. Years of "stuff" will do that you. If you heard me trying to talk, I sound like I have a bajillion marbles in my mouth so i'm glad I sound ok on here lol The pain is very slowly going down. I've never healed so slow in my life. I think I will do what you did and hunt down someone like a research specialist.

It really saddens me to come on here and find people more educated than actual doctors. To find people that could have been helped sooner if it weren't for their doctor's lack of knowledge. I am very thankful for all the feedback. I plan to follow up with an ENT or another oral surgeon soon and keep a close eye on things. EricS, thank you for all that information. I have done my research and found the few studies supporting anything helping much, but there was promise with High doses of Lycopene, which I just started in pill form and as for Turmeric, I do take that too, but in a soup kind of form. As that is the only way for it to really absorb into your body at the amount you need.

Getting biopsies probably pisses it off, i'm sure. That was a worry of mine as well. What if we aggravate it? As cancer often comes from constant irritation.

Regardless, I have really odd things that go on in my mouth. My papillae is raised and keeps raising. My last ENT I went to for sinus issues years ago that never really helped, thought nothing of it, but that's for another forum.

Thank you again so much for all your info and patience. There are amazing people here for support and guidance. Smart people. May you all stay well.