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both your oral surgeons have out of date information.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.