Welcome to OCF, Jay. You will find lots of support here to help you thru this. Being a 2nd round survivor myself, all I can say is that the 2nd time is easier. You have so much more knowledge about what your treatments are like and how to care for yourself. Although its still not an easy road, its very much something that can be done.

Best of luck with your treatments.

Hi Jay,

So sorry that are facing this again. You have found an awesome group of people. There is so much knowledge, care and concern here. We are here for you every step of the way. Keep us posted with how you are doing.

Suzanne

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! )

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.

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

So you do not know yet what they will recommend Tx wise? It sounds like surgery and depending on the tumors size followed by radiation with perhaps concurrent chemo. Many on this site have been through exactly that Tx and will offer many helpful suggestions. you are fortunate to have found this site so early on as it will prove to be the best site all around for the information and support you need from now thru recovery.

Thank you, David,

Yes, I feel VERY fortunate to have found this site. And, yes, the Dr. who did the biopsy did mention all those possiblities (tortures!). Well, I spent 17 years working the back wards of a mental hospital, so I have a well developed sense of gallows humor, which I hope will help me through this too.

I will not know the specific treatment plan until I meet with Dr. Ferris in Pittsburg on Monday.

Thanks for your quick support!

Linda Rose

Let us know as soon as you do.

Hi Linda,

I also have scc on the right side on my tongue. I wish you much luck with your treatment. You may want to start your own thread if you have not already. That way, the comments will all be to you.

Suzanne

Hi Linda and welcome to our home. I have been taking the Magic Wash and it sure saves a lot of pain. I have the disfigurments that come with good old OC plus a few including loss of all teeth. I live with it and don't even try to hide these gummy lips and mouth. LOL let em learn to lover me as I am. Keep us posted.

Welcome Linda, but I am sorry that you had to find us. You will find this site and the people here to be very helpful and supportive. You can even search the site when you have questions and find several different ideas and answers.

Keep your sense of humor.

Patty

Oh, Guys, Thanks to each of you for your encouraging remarks. And as I scan down through your "signatures" I can see that you've each had your own little piece of Hell. It makes me sad, but also helps prepare me for what's possibly ahead!

Well, I mentioned that had a gallows humor - I live in a small log house on the mountain, and have sometimes used a screen name of Mountain Mama. I also prefer turtlenecks - like to think it helps hide my double chin. A girl friend called today, and I explained that turtlenecks may become my style for both winter AND summer! So... maybe I'll just take the Mountain Mama personna completely, and sit on the rockers on the front porch and have spittin' contests. Especially if I lose my teeth too. BTW, can I still spit without a tongue? Now, I don't mean to make light of all this pain and suffering - I just need to laugh so I don't cry.

We don't have a devil icon!