Coping with Tongue Cancer: A Lonely Journey 

I’ve never found a support group for my type of cancer or anyone else with a similar experience.


Get Permission

In addition to all the physical and mental adjustments I’ve had to make since my diagnosis, what has been so frustrating is the realization of how little research there is in my type of cancer, especially in finding more effective treatments.

—Betsy Keller

Thirteen years ago, at just 34 years old, I never expected that my life could be interrupted by cancer. A nonsmoker and nondrinker, I had always practiced a healthy lifestyle and wasn’t concerned initially when what looked like a cold sore popped up on the left side of my tongue. But as several weeks went by and the sore didn’t go away, I saw an oral surgeon who removed some tissue for a biopsy and said that it was negative for cancer.

I tried putting the problem out of my mind, but when the sore wouldn’t heal and, in fact, started to hurt and bleed, I saw another oral surgeon. This time the doctor took a significant amount of tissue from my left lateral tongue and tongue base, and even before the biopsy results came back, announced that he was sure I had cancer. The biopsy report confirmed stage IV tongue cancer, and I had surgery to remove 25% of the left side of my tongue along with salivary glands and lymph nodes.

Another Scare

I thought that would be the end of my ordeal. My doctor had told me that once the tumor is removed, the cancer usually doesn’t come back. But in 2006, I had another scare when a tumor appeared in the same spot. Once again tissue was taken for a biopsy, and although the results were negative, so much of my tongue was now removed it became difficult to speak and eat normally. Last year, the cancer recurred and I faced the greatest challenge of my life.

Afraid that more surgery and treatment would completely disfigure me, I sought out a couple of medical opinions from two of the top cancer centers near my home. The first oncologist I saw said that in order to remove all the cancer he would have to do extensive surgery on my tongue, but that I could have reconstructive surgery in which he would build a new tongue using cadaver tissue. However, even with the reconstructive surgery, the chances were high, said the doctor, that I probably wouldn’t be able to speak clearly and that I would need a permanent feeding tube to get nourishment—two possibilities I couldn’t fathom.

The second oncologist I saw said that rather than do additional surgery, he would laser the cancerous growth, preserving the amount of tongue I had left, and prescribe 39 sessions of radiation therapy, followed by several weeks of cisplatin and carboplatin chemotherapy.  I decided on the latter course.

While the treatment was rough—I had to be hospitalized for 5 days because of near renal failure from the chemotherapy—and it took a long time to recover, I’m grateful that I’m slowly getting my life back, although I know it will never be normal again. Despite all the surgeries and treatment, the wound in my tongue has never really healed, and I continue to see my oncologist monthly for checkups.

Learning to Cope

When I was first diagnosed with tongue cancer, I was young and strong and I didn’t have much fear. But this last bout was terrifying, not just because I realized I could die but because I knew my life would be irrevocably altered. Although I can speak fairly clearly, my mouth and throat are so dry, chewing and swallowing food is difficult and it is easy for me to choke. I have been self-conscious of eating in public, and for much of the last year, I wouldn’t leave my house—I experienced panic attacks at just the thought of going outside.

At one point, I was so despondent that I wanted to die, but antidepressants have helped me cope. Even though I have no sense of taste, I get pleasure in being able to eat small amounts of food, and I’m slowly regaining enough confidence to have friends over for dinner and venture out to restaurants.

Searching for Answers

In addition to all the physical and mental adjustments I’ve had to make since my diagnosis, what has been so frustrating is the realization of how little research there is in my type of cancer, especially in finding more effective treatments. And in the 13 years since my diagnosis, I’ve never found a support group for my type of cancer. I don’t know anyone else with a similar experience to talk to, so this has been a lonely journey.

Still, I’ve learned to accept my life as it is now. I’m grateful to be alive and have the chance to be with my family. I know that not every cancer patient is so lucky. ■

Betsy Keller lives in Boca Raton, Florida.


Related Articles

SIDEBAR: Support and Resource Links

For a list of national, not-for-profit organizations that provide programs, information, services, and support for people with cancer, please visit:

www.cancer.net/publications-and-resources/support-and-resource-links


Advertisement

Advertisement



Advertisement