Squamous Cell Carcinoma (Floor of Mouth) Survivor

Don’t underestimate the power of support

Nancy Leupold was diagnosed with Stage I squamous cell carcinoma and created her own support network.

No one likes going to the dentist, but I’m thankful I did. In April 1990, I was visiting a new dentist for a routine examination when he discovered a suspicious lesion on the floor of my mouth. He referred me to an oral surgeon who performed a biopsy that led to my Stage I squamous cell carcinoma diagnosis. I was petrified.

The oral surgeon referred me to a head and neck surgeon—a profession I never before knew existed. I was totally without knowledge of this disease and everything surrounding it. Fortunately, my surgeon explained a lot to me and my husband, which was very helpful.

My treatment options included surgery or radiation therapy. Because my cancer was still at an early stage, my medical team and I agreed that surgery was the best choice. Luckily it was successful and did not require radiation. I also had very few side effects other than mild dry mouth, which I still have to this day.

My friends and family quickly learned that I had been treated for oral cancer, and they were very caring and willing to help in any way they could. However, few understood the psychological aspects of the disease, so it was difficult to discuss those with them. I really wanted to meet others who had gone through a similar experience.

At the time, there were support groups for a lot of things but not for head and neck cancer survivors. I talked to my surgeon about it, and he suggested that I start a group with his assistance. He also introduced me to the chairman of dental medicine at a local medical center, and these two men were instrumental in helping me start the first support group for head and neck cancer survivors. We called it Support for People with Oral, Head and Neck Cancer (SPOHNC).

I held the first meeting on Sept. 10, 1991. Nine people, including me, showed up and sat in a circle. None of us knew each other, but we knew we had something in common. One by one we exchanged our stories and began to recognize similarities between them. Sharing our experiences was extremely therapeutic and by the end of the evening, nine strangers had become friends and we all felt a little less alone.

That meeting represented the start of the first SPOHNC support group. There are now 127 SPOHNC support groups across the U.S. I facilitated that local support group for more than 15 years, and it is one of the most rewarding and educational things I’ve ever done.

SPOHNC is much more than support groups. Our organization is the only one of its kind in the U.S. There was very little information about oral or head and neck cancer when I was diagnosed, but SPOHNC now offers a great deal of information to the newly diagnosed, to survivors and to their families and friends. “Meeting the Challenges of Oral and Head and Neck Cancer, A Guide for Survivors and Caregivers” is a book filled with information from diagnosis to survivorship and more. We also have a very special book of recipes and resources for those who are coping with eating challenges, called “Eat Well, Stay Nourished, A Recipe and Resource Guide for Coping with Eating Challenges.”

In addition we have more than 200 volunteers who are part of our National Survivor Volunteer Network (NSVN). These members respond directly to patient inquiries regarding different aspects of diagnosis and treatment based on the similarity of their own survivorship experiences to that of the new patient. And to keep our constituents abreast of the latest developments in the diagnosis and treatment of oral and head and neck cancer, we offer a newsletter eight times a year.

For the newly diagnosed patient, I highly recommend first finding out all you can about your disease and then finding a local support group where you can meet with others who understand what you’re going through. You will likely gain new perspectives on handling the issues surrounding your cancer and also some friends along the way.

It has been almost 22 years since my diagnosis and I’m doing well. I still go for yearly checkups with my head and neck surgeon to make sure nothing has changed. This past year I had a sonogram of my thyroid and the year before I had biopsies of four nodules; fortunately, all were negative. While the fear of reoccurrence is still on my mind, I try not to think of what could be and instead plan for the future. I have been married for almost 51 years and my husband and I have three daughters, six grandchildren and an orange tabby cat named Cinnamon. Spending time with my family helps me keep things in perspective, and I look forward to each new day that God gives me.

Stay positive.