Hello everyone. First let me say I feel a bit guilty posting here after seeing all you people deal with actual cancer when I myself am just showing strange symptoms. Let me start at the beginning.

I am a 21 year old college student and it is exactly one year to the day I noticed my tongue was painful and inflamed. When I took a look in the mirror I noticed three white spots on various locations of my tongue. This scared me, but I decided to wait, hoping the pain and the spots would go away. Of course, they didn't, and only grew until, before I knew it, the entire surface area of my tongue was covered in the rough white patches. Not only that, but a sore began to develop on the left side of my tongue. This was the final straw and I finally went into an oral surgeon who told me it was probably nothing to worry about, but took a biopsy. The diagnosis was lichen planus and I was relieved, as I was sure it was cancer. I began treatment with steroids which did absolutely nothing. I went to an ENT for a second opinion (3 other ENTs shrugged me off because of my age, btw. They wouldn't even look in my mouth!) He gave me a second biopsy, and this time the diagnosis was chronic inflammation, no lichen planus. This worries me, as the spot on my tongue is still very sore and sensitive. On top of that, I began to develop an earache in the left ear which steadily grew in intensity. Soon after, pain in my throat on the left side developed as well. This was another last straw and I requested a CT scan of the neck. I got the results back and they were stated to be 'unremarkable'. This is the position I'm in now, after eight months of searching for an answer. I told myself the CT was it; if nothing showed up, then there was nothing wrong. I am a college student and I can barely afford doing this. But I still can't shake the feeling that something IS wrong, especially with the somewhat intense pain in my ear and throat for the past nine months. Pain is supposed to tell us that something's wrong, right? What do you guys think? Have any of you had experience with this type of stuff? What more can I do?

Thanks in advance!

-Colton

Everything I would advise, you have already done. I doubt this is Thrush but has anyone considered that? Have you tried eating Activa, sometimes the bacteria on your tongue can get out of wack. Whatever you do DON'T give up until this clears up because it's not normal at any age!

Hi Colton,

It is definitely smart of you to follow up and try to get to the bottom of the pain, that must be frustrating that no one is taking you seriously. It is pretty ridiculous that the ENT's wouldn't even check out your mouth. However, if it makes you feel better, when i first had a dentist and then an oral surgeon look at my sore, they were both immediately pretty certain it was cancer. I tell you this because if you have had multiple opinions, plus a biopsy and CT scan, you may be ok.

it sounds to me like you could have leukoplakia, which can be precancerous, so definitely keep an eye on it. i hope it is not cancer!

My first biopsy was diagnosed as Lichen Planus. I too was given steroids, but all they did was make me drool.
It seemed like after that first biopsy, it 'triggered' something, and 3 months later it was obviously a tumor. My ENT knew it was cancer then, but a second biopsy only showed Hyperplasia. The same sample was retested and it was SCC.
As far as I know, Leukoplakia is an unidentified white patch that can't be scraped off. It can be many things, including Lichen Planus.
However, unlike you, I only had a white patch on the side of my tongue - not anywhere else.
Lichen Planus can mimic the symptoms of cancer. It can cause severe pain on your tongue that radiates to your ear and throat.
The fact that you had a CT scan and nothing showed up is great! But if you drink and/or smoke you should quit to lessen the risk of it developing into something else. If there is a tooth irritating the area - get it fixed.
Most Lichen Planus DOES NOT develop into cancer, but it can be a warning sign that you need to pay attention to, if it changes in any way.
I don't think there is a cure for it, but it's been a while since I've done any research on it - maybe there is one now?
The chances are, Lichen Planus is all you have. Just keep an eye on it and let us know how you are doing.