Hi Kelli,

I was diagnosed in March 1989 after going a long time with a suspicious (and growing) spot on my tongue that an internist, dentist and oral pathologist all said was "nothing to be concerned about" because I was a nonsmoker. I finally got a referral to an oral surgeon who performed a biopsy and determined that it was cancerous. He in turn referred me to a medical oncologist who worked with a head and neck cancer team at Dana Farber Cancer Center and they collectively decided I needed a neck dissection, partial glossectomy and radiation. The results of the surgery indicated that they had clean margins, and the lymph nodes they removed were clear, but the tumor showed some signs of being potentially aggressive so they felt strongly that radiation was necessary. I ended up having external beam radiation followed by brachytherapy.

Since my tongue post-surgery became lopsided (and swollen for awhile), I also had the problem with biting it during the course of eating, talking and sleeping. In fact, sometimes I still do, although less frequently. It takes some time to get used to it, and I found I had to work it slowly for awhile to figure out how to keep it out of the way. At least when I'm awake I can deal with trying to be careful with it, but I've had to resort to the mouth guard approach for sleeping.

By the way, I also sing in a church choir, and getting back to singing was a bit of a challenge for me.

Please stay in touch and keep us updated on how you're doing.

Cathy