I obviously need help, but would appreciate any commentary or suggestions from those with similar experiences. 44 year-old male, physically healthy, mentally toast. I am now into year four of having multiple mouth pain problems. I see two different ENT's and two different oral surgeons an average of a couple of times per year each. Clean bill of health every time.

The predominant complaint is my tongue feels as if it is swollen on one side (chewing side) and occasionally my speech is affected. The left side of my neck also feels strange, not so much pain, just a sensation of fullness without any visible signs. This used to be very sporadic but now is more frequent and the symptoms last longer. I have regular dental cleanings and have had both Velscope and Vizilite tests in the past six months. I have had a scope run down my throat. I have also had an MRI (with and without contrast), all normal. I drink too much wine and use smokeless tobacco once or twice a week. Literally, I go buy a can, and within an hour, realize what a moron I am for doing this in light of my symptoms and throw the can away. There has never been a visible sign of any kind until two weeks ago. The oral surgeon said that one of the big bumps on the side of my tongue was red and irritated. Velscope showed nothing. He sent me home for a month and said he would look at it again then. He also told me to lay off the breath mints, which I consume by the pound.

Here are my questions:

1. One of my oral surgeons (post-residency was in head and neck cancer) said that cancer will almost always originate on the surface of the tongue, etc. Does anyone have anything to add regarding the periodic pain and swelling in my tongue all this time with no visible symptoms?

2. I have tried to locate a dentist to do a brush biopsy before they hack part of my tongue out for a traditional biopsy and got no response from CDX. Are brush biopsies generally accurate or should I go ahead and bite the bullet?

3. I got the MRI to avoid the radiation of a CT or PET and I have always heard that MRI's are better for soft tissue imaging. Is that true?

4. How fast do these SCC's actually grow? If I get the "all clear" and continue to have symptoms, should I have it checked annually?

I visit this site regularly and treasure the resource. Sorry for the novel....it has taken me three of those years to get up the courage to write.

Sorry for your problems but at least you are paying attention to them. I was having pain with spicy foods on one spot of my tongue for about 6 or 7 months before a sore developed. The tumor developed and grew very fast for me...even though they said that OC is usually slow. Once it was visible it exploded in size.

Just by chance are you near Houston? MD Anderson is one of the best cancer centers in the world.

If I was you I would also slow down on the wine and stop the smokeless tobacco. Btw, what is smokeless tobacco? Is that something you chew?

When you say "very fast", can you give me a timeframe? Should I go back to the oral surgeon and demand a biopsy right now? If I can prevent its doubling in size in a month (not to mention the relief if it turns out to be nothing), why should I wait? I like the guy and he seems very competent, but it is not a life or death issuse for him.

When I say smokeless tobacco, I mean snuff. I just did not want to cross any protocol boundaries by being definitive.

Will someone at MD Anderson even see you if you have not been definitively diagnosed as having cancer?

My first external tumor doubled in size in about ten days according to some photos I took -- Second tumor was inside front of tongue and was swelling tongue, but hard to figure size -- Third tumor was on BOT and seemed to be slow.

Push for a biopsy -- Better to know bad news sooner!

It went from barely seen to a tumor of 4.778cm in two/three months. My tongue only hurt in one spot and that's were the tumor developed. My tongue was bothering me from November 2007 to April of 2008, late April to early May I noticed a small sore...like a canker sore the size of a pea. It seemed to explode in June and July. My surgery was August 13th, 40% of my tongue was removed. I'm not insinuating anything about your scenario but being "involved" in your oral care is a must...I wouldn't ignore anything, stay on top of it. I would stop smoking and drinking for the time being. There are many reasons for mouth issues.

A biopsy is the only way to know if something is cancer.

Harry,

I have to disagree that "...cancer will almost always originate on the surface of the tongue." Cancers start in the deeper layers and work their way to the surface. You should watch the video on the VELscope site and also read other links on the home page for a better understanding. http://www.velscope.com/

I wouldn't get a brush biopsy. The scalpel biopsy is the gold standard and the only way to really know if something is a squamous cell carcinoma. A biopsy does not require hacking away part of your tongue. A small area is removed, sutures are placed and it heals rather quickly. The stitches can be annoying and the whole thing can be uncomfortable for a few days. It's really no big deal.

Hope this helps you and you have to stop buying, using and then throwing away the "smokeless" tobacco.

Jerry

Thank you for the advice and this may be a stupid question, but how do they determine where to take the biopsy if there are no visible signs? Will the entire tongue contain cancerous cells?

In my case, the whole front of my tongue was swelling, so he did a punch biopsy from the underside.

Not to dissuade you from getting the biopsy done, but the surgeon said it probably took years for my first tumour to develop. I have never heard of a brush biopsy, but if I were you, I would go to a cancer center and ask for a full biopsy to rule out cancer. Tell them you "know how they like to be thorough and catch things early".

I would expect they would take the biopsy from the area you tell them is sore. One piece of advice there is that you should be SURE that the cancer dr. or oral surgeon knows EXACTLY which area is sore. With my very first biopsy - the oral surgeon biopsied the wrong spot. I pointed out the spot with my finger but now wonder if my finger obscured his view! Either that or he was an idiot.

Welcome to the site - lots of great info here.

Donna

oral surgeons are not going to be eager to biopsy something that they cannot differentiate in some manner from the surrounding tissue, and the brush collection system is tiny and only collects from very small spots. If you have a spot that is discolored - light or dark, is hard (indurated), is raised above the surrounding tissue (exofitic), is ulcerated, or is textured differently than the surrounding tissues.... AND has persisted for more than 14 days, biopsy is a likely path to take, to get a black and white answer.