So how in the world did we go from point a to point b?

A little of the past before a little of the present is in order.

Back in April, I had noticed a small sore on the left side of my tongue. It looked like a regular old canker sore, which I’d gotten before from time to time (although rarely on my tongue). I hadn’t had any for quite some time, but figured it would go away on its own.

It didn’t. In fact, it got a bit bigger, and the area around it became red and inflamed as well. Since I was headed to the dentist to get a cracked filling replaced, I asked him about it. He told me it looked infected, gave me some antibiotics, a dental paste (sort of like liquid gauze), and told me to alternate rinsing with salt water and Peroxyl. Not better in a week? Go to the doctor.

Well, it wasn’t better in a week, so I headed to my primary care doctor. I had to go anyway to get my cholesterol rechecked, so had him take a look at the sore, which had grown a bit bigger. After looking at it, he suggested a trip to an ENT. He did point out that my risk factors for cancer in that area were quite low (which I knew: never smoked, never used any other tobacco products, not a big drinker, and no history of oral cancer in the family, although breast cancer runs through), but they worry about things that don’t heal as they should.

So, off we went to the ENT. He took a look, and decided that we should try a topical antisteroidal to see if that would help. None of us, of course, considered cancer as a primary factor. If it wasn’t better in a week, I was to return for a biopsy.

It wasn’t better. In fact, it continued to grow, and the ulcerated part also grew larger. So, biopsy time.

If you’ve never had the joy of having needles stuck directly into your tongue, you’re not missing anything at all. First, a small topical gel was applied to the affected area to numb it a little. He then injected novocaine directly into two different places in my tongue – two different areas of the sore, I should say.

About five minutes later, he took several small samples from the area. Even with the novocaine, the pain was still quite intense. They sent the samples off to the lab for the pathologist to review, and told me to hang tight while we waited for the results.

Four days later, they called me into the office.

“The pathologist says it doesn’t look good.”

The pathologist, in fact, wanted another set of samples, deeper into the tissue, to confirm what he saw in the first sample. So we went through the procedure again, this time with a pain level five times the first time, as the doctor dug out a core sample from about the center of the sore. They then sent me home, told me to hang in there, and we waited for the results to come back.

And that, my friends, is how we ended here, with a diagnosis that surprised every health professional we’d seen to that point (plus all the others we’ve seen in the meantime) and shocked the hell out of me and my family.

“The latest biopsy did come back as cancer.”

Those are definitely not the words you want to hear. Now, admittedly, after dealing with a sore on my tongue that wouldn’t heal for about three months and that was surrounded by a reddish area that kept growing, this was in the back of my mind as I made my way from my dentist to my regular doctor to an ENT (ear, nose, throat doctor). But oral cancer, in my tongue? Me? A lifelong non-smoker who had never taken a puff of anything, legal or not, and who had never used any other types of tobacco products at all? This is the sort of cancer that most often strikes older men with three pack a day habits, not females under 40 who have never adopted that habit.

“The doctor recommends radiation, followed by surgery if necessary.

When I asked, the reasoning was that surgery on the tongue or in the mouth is disfiguring and can have a large impact on things like speech and eating, especially given where the tumor on my tongue happens to be (left side, about in the middle from front to back). Radiation can shrink tumors to the point where surgery afterwards can have less of an impact than initial surgery can.

However, conventional wisdom is surgery first, then radiation if there are areas missed by the surgery. Ever hear that phrase “the margins are clear”? That’s what post-surgery pathology is looking for: no evidence of cancer cells around the perimeter of the removed tissue, which generally indicates radiation is not necessary, although consistent, regular followups are.

Besides, my speech had been degenerating for a couple of months since the tumor continued to grow and is ulcerated in the middle, making it very painful to talk. And swallow. So I sound like someone who might be a little mentally challenged, and the only way my speech could be any worse would be if I couldn’t speak at all. I can’t speak on the phone at all right now, and it’s getting pretty tough for people to understand me when we’re face to face.

So, off we went for a couple of other opinions. I haven’t written about this previously, because I’m a fairly private person, all things considered. But there’s a dearth of sites about oral cancer compared to things like breast cancer, so I thought I might give people like me, who are searching for others’ experiences, anther place to land if they, too, are given the news that there’s something growing on their body that shouldn’t be.