Good morning to all. I'm Linda from near Seven Springs, 60 miles east of Pittsburgh. I joined last night when I couldn't sleep.

I smoked for a short time (1-2 years) many (30+) years ago. It's not that. I rarely drink. My tongue became sore 11 years ago. I had just gotten a new filling in Westmoreland Co., and was moving back up to the mountain, and under a lot of stress. At first I thought it was a rough edge, and went into the local dentist in Somerset and asked him to smooth it. After about 2 trips, he said there are no rough edges - something else. He sent me for a biopsy in Somerset, now 10 years ago. It was TERRIBLE. They took about an inch long slice out, my tongue was all bruised and swollen, some sutures came out before I even got home. I started crying a little in the chair, and he said, "It's ONLY a biopsy!" The biopsy showed no cancer, but said it looked like someone who used smokeless tobacco. (Oops, my secret's out! smile )

So... over the years, my local dentist did find an oral pathologist for me (in Canada), who referred me to one at Pitt Dental School. That's about 6 years ago. He said he thought it was my nerves, and that I just moved my tongue too much in my mouth. Prescribed minor tranquilizers.

I asked my PCP for a script of Magic Mouthwash about a year ago. She'd never heard of it, but obliged, but insisted that I see a skin specialist. (Magic Mouthwash is mixed by the pharmacist, and is just liquid benedryl, liquid lidocaine, and Maalox. It neutralizes the mouth PH and takes the pain away temporarily) I balked at going to yet another doctor, (I'd already been to the best doctors in western PA) but I went. He immediately asked if I'd had allergy testing. Maybe you're allergic to the mercury fillings, he said. So he had me go to Montifiore Hospital for allergy testing in May, and the first "tray" they put on my back was a "dental tray" which tested for the substances usually found in fillings, partials, etc. I reacted strongly to nickel, mercury and cobalt.

I went back to my local dentist and said we need to have a talk! He said, "I'm not equipped to do that!" (replace fillings) He thought it through, and suggested that I check out Pitt Dental School. Well, they are not laughing at me, and they have been wonderful. For the last two semesters a sweet woman has been drilling and replacing. She's very kind, and the instructors seem to be interested in what's going on in my mouth. Some were initially skeptical (the ADA denies that mercury fillings are harmful) but they could see that the sore spots matched exactly to the places where my tongue came into contact with the metal. So, all that soreness was nothing more than contact dermatitis on my tongue.

Oh, the first filling to come out was the one where the sore spot started. The one I'd been trying to get smoothed off 11 years ago. The student told me right away that the mercury was "not right - too soft and too shiny." She said that when they used to mix it by hand, they did not always get the mix exactly right.

But, the oral pathologist was also consulted (same one I'd seen there six years ago) and he prescribed a steroid mouthwash to reduce the inflammation. I used it about a month, and it got worse - I got a "ridge" where the red spot used to be. He called it a TUGSE. He said I'd had a paradoxical reaction, and needed a biopsy right away. This was last month.

My diagnosis came 3 days ago - SCC on the right lateral edge of my tongue, and also positive on a second spot that was biopsied, underneath, where the tongue attaches to the floor.

I was very lucky, to get an appointment fast, with Dr. Ferris, three days from now - Monday.

I had cancer about 20 years ago. A modified radical mastectomy at Magee in Pittsburgh. I didn't have to have chemo, and went into a study there for Tamoxifen. I think they finally quit following me now, after 20 years. smile

So, I know what I have to do, and will do it. I'm still in a bit of shock, but not depressed. A little scared - not of dying, but of the pain and disfigurement I may have to endure before I get to that. I'm here to learn, and for support. Friends are well-intentioned when they say, "You'll be OK," and I don't really want to scare them by telling them that I think the fact that two different positive sites might indicate that it's not a nice little localized "in situ" that will just go away after excision. *Sigh*

Thanks for listening.
Linda

1998 1 Amalgam replaced->oral lichen planus R lat tongue; 1999 biopsy "no cancer-looks like uses smokeless tobacco"; 5/08 allergy testing pos to filling & crown metal; 9/08 replace amalgam fillings; 1/09 Partial glossectomy; 5/09 total glossectomy & free flap; rad & chemo just completed.