My Journey with Oral Cancer

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I had what I thought was a canker sore that didn't heal. It ended up being cancer.

It was early January of 2014, when my oral surgeon told me that I had squamous cell carcinoma — base of tongue cancer.

He was so surprised by the biopsy results that he made a phone call to double check them before I arrived at his office for my follow-up appointment. In all actuality, neither he nor my dentist thought that the painful lesion at the base of my tongue looked like cancer. Both of them told me that oral cancer rarely hurts. This is true, so I am glad mine did. The pain is what allowed me to be treated while it was still at stage 1. The cancer looked and felt just like one of the many canker sores I’d suffered in my lifetime. The only strange thing about it was its location, and the fact that it refused to heal.

A couple of months earlier, I was in a ton of pain, so I was relieved when I heard from my dentist’s office. It was time for my three-month checkup. “Perhaps Dr. F will know what’s up with this sore,” I thought to myself.

Dr. F lifted my tongue up as far up as it would go. The lesion was tucked under my tongue — way in the back. Since oral cancer rarely hurts, and because it didn’t look like cancer to him, my dentist felt that the tissue was infected. He prescribed an antibiotic. He was very firm, however, when he said I should return, at once, if it did not heal by the end of 10 days. At exactly 5 p.m. on the tenth day, I begrudgingly called his office.

My cancer surgeon later applauded my dentist for saving my life.

After my diagnosis, I was referred to the Swedish Cancer Institute in Seattle. The four-hour drive from Forks, Washington was long. Head and neck surgeon Dr. N and his assistant were caring, thorough, and funnier than hell. I felt so comfortable with them, that when he said I had time to get a second opinion, I told him I didn’t need one. I had surgery to remove the cancer on Jan. 21.

Dr. N recommended that I get a neck dissection. He said that although the tumor was small, the only way he could rule out spread was to remove all of the lymph nodes on the right side of my neck. I lived on liquid nutrition, taking nothing by mouth, for 10 days. During surgery, it was discovered that the cancer had spread to the floor of my mouth.

Still, Dr. N felt he had gotten a clear margin. He said we should keep chemo and/or radiation in my arsenal in case the cancer returned. I was cleared to eat and drink by mouth when I could eat a cup of apple sauce in front of the doctor without choking. Even eating soup was comical at first. My first bowl of wonton soup took two hours to eat, but I got it down...darn floaty green onions.

Half of my face, neck and mouth are still numb after nine years. Although my face regularly feels like it is sliding off of my skull, I suffered no real disfiguration.

I was told from the start that because my cancer was not related to active tobacco use (I quit smoking 16 years prior to my diagnosis), and because I was HPV negative, I will most likely get oral cancer again. Dr. N said it could be in five years, 10 years, or in 20 years, so I must remain vigilant. I remain vigilant by seeing my oral surgeon every six months. I know that if I get a sore or lesion that doesn’t heal within ten days, I need to hightail it to Seattle.

So far, so good; the beast has not returned.

Although I know that I will most likely be revisited by oral cancer, the experience changed my life. It woke me up to my mortality. It taught me to live every day with a sense of purpose — to pursue my dreams now, not later — and for that I am very grateful.

This post was written and submitted by Berlinda James. The article reflects the views of Berlinda James and not of CURE®. This is also not supposed to be intended as medical advice.

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