Nancy’s Story

Until that day in April of 1990, I had never heard words like "squamous cell carcinoma or head and neck surgeon" These terms could just as well have been part of a foreign language that I had never learned. Not only was the vocabulary foreign, but I had never known of anyone who had been diagnosed with head and neck cancer. I did not know that oral and head and neck cancer was considered a "rare" disease accounting for about 5% of all new cases of cancer diagnosed in the United States and I was totally unaware that approximately 60,000 new cases of oral and head and neck are diagnosed each year.

However, following the biopsy report indicating a malignant tumor on the floor of my mouth, I soon realized that it was necessary to expand my "cancer vocabulary" and knowledge about the type of cancer I had, if I were to understand the options for my future. Unfortunately, I was not able to find much printed matter on the subject. And what I did find was not very encouraging.

Like anyone receiving a diagnosis of cancer, I was devastated. However, within several hours of hearing the report of the pathologist, I was in the office of a head and neck surgeon. This surgeon was a very caring and devoted man and explained things to me in layman's terms answering what few questions I had. But therein lay the problem. I had so little knowledge of this disease, its treatment, and what was to follow, that I did not know what questions to ask. As in the past when confronted with any type of illness within the family, I assumed that the sick individual was in the responsible hands of the healthcare provider. The primary physician and subsequent health care professionals were all trained in their fields and knew much more about illnesses than I or members of my family. Who was I to question their expertise?

My life began to change dramatically in a very short time. At the time that I was diagnosed with carcinoma of the floor of the mouth, I was employed as a teacher of deaf children. Continuing my work with children was important. As a matter of fact, from the day of the biopsy on April 27 until I was admitted to the hospital for surgery on May 16, I missed only a few hours away from my job to go for tests. Keeping busy helped to avoid the "what ifs" that were creeping into my mind.

My surgery wasn't without complications. Consequently I was in ICU for several days and not able to get out of bed. On or about the third day after surgery, I was moved to a semi-private room. It was at that time that I got my first glimpse of myself in a mirror. No one had prepared me for what I faced in the mirror. I cried and refused to have visitors other than my husband and daughters. My face was so swollen and black and blue. I likened myself to Herman Munster of the Adams Family, albeit I was not quite his height. Although I was on the "head and neck" floor of the hospital, I never encountered another person with a diagnosis similar to mine. Nine days after surgery I was released from the hospital and returned home to my family. By this time, the swelling had subsided and the bruises wee almost invisible--at least with the help of make-up.

Fortunately, for me, my cancer was discovered at an early stage and following the removal of the tumor, I was considered "cured." However, the "cure" left me with problems I had never anticipated. From all outside appearances, I was fine. My facial disfigurement was not noticeable unless I drew attention to it. My problems were primarily on the inside of my mouth where a marginal mandibulectomy had been performed which involved the removal of 13 lower teeth, the entire floor of my mouth and extensive bone in my mandible. This surgery left me with a severely swollen tongue that was partially paralyzed and yet had a stinging sensation and very little feeling on the right side of my face. I had much difficulty swallowing and I was drooling out of the right side of my mouth. At times I felt my speech was totally unintelligible.

In the weeks that followed, I saw my surgeon regularly and he informed me that all the cancer had been removed and that I would not need to have radiation therapy. Of course at that time, I did not realize what radiation therapy involved nor anything about its side effects. I was just happy that I would not have to see more doctors and spend more time away from my job. I began to see my glass "half full" instead of "half empty."

The management of head and neck cancer is often prolonged and complicated. Because of the anatomic and physiologic complexity of the head and neck, treatment of cancer in this area requires the integrated efforts of a growing list of health professionals including head and neck surgeons, otolaryngologists, oral pathologists, plastic surgeons, radiologists, oncologists, oral surgeons, dentists, prosthodontists, speech therapists and physical therapists as well as others that may be treating other problems. After a while, a patient begins to feel that he or she is living in a doctor's office or medical facility. Sometimes I was seeing a health professional daily or even twice a day.

All the physical defects and side effects of treatment, the length of time that treatment requires, the involvement with such a large number of health care professionals and the concerns such as that of health insurance coverage, employment, financial security, often influence the way in which an individual views himself and his ability to cope. In spite of the large number of health-care providers with whom head and neck cancer patients interact, few providers have the expertise or the time to offer care in the psychosocial area. Psychosocial areas including personality characteristics, emotional states, social support, self concept and body image and quality of life are often not addressed. Thus it is not surprising that many patients having difficulty coping with the disease, its treatment and social and emotional issues, become depressed and feel the need for support in dealing with their physical, emotional, psychological and social issues and concerns.

In my case, my family and friends were very supportive and encouraging, but I felt that even though they were helpful and sympathetic to my needs, they really did not understand how I was feeling and what I was going through. They could not see or feel the problems I was having. Even my physician could not tell me how and why my body reacted differently than another with a similar diagnosis and treatment. No one could really understand unless he or she had a similar experience.

And so I decided to find a support group. In as much as this is an era of self-help I was certain that there was a group for me. I felt if I could only talk with someone who had experienced similar problems and feelings, I would have fewer fears. I needed to talk with other survivors.

And thus at one of my post-operative visits to my head and neck surgeon, I inquired about support groups for people with problems similar to mine. My head and neck surgeon, a truly kind and caring surgeon, informed me that to his knowledge, there were no support groups specifically for oral and head and neck cancer patients in the area. I felt very strongly that there was a need for such a group and much to my surprise, my physician concurred and suggested that I start a group. My oral surgeon also added his support. He even offered me his old Macintosh computer to help get started. (I knew nothing about computers, but I was soon to learn.)

My surgeon arranged for me to meet with Dr. James J. Sciubba, Chairman of Dental Medicine at Long Island Jewish Medical Center, who was very interested in assisting in the development of a program of support for head and neck cancer patients and thus the groundwork for, Support for People with Oral and Head and Neck Cancer, (SPOHNC)), began. That was in November of 1990. SPOHNC held its first meeting when eight head and neck cancer survivors gathered to share experiences in September of 1991.

Today SPOHNC, a not-for-profit organization, serves a national population of cancer patients and their families and friends providing information, encouragement and support through telephone networking and a national newsletter published nine times each year. Each newsletter features an article authored by a health care professional involved in the care of patients diagnosed with oral and head and neck cancer. When appropriate, SPOHNC also serves as a referral source to other organizations and services. During the past several years, SPOHNC has been hosting a web site, which provides information about our organization as well as a “listing” of articles appearing in past newsletters. (http://www.spohnc.org) Our web site also offers many links to other cancer resources. A directory of products is also a part of our web site. Many of these products may help to mitigate side effects of treatment and improve the quality of life for oral and head and neck cancer patients.

Through outreach programs, a greater awareness of oral and head and neck cancer is developing. People are becoming aware of the importance of screening for this disease as well as ways of prevention. In addition, health care professionals as well as people diagnosed with the disease are becoming more conscious of the importance of patient support groups. During the past two years, SPOHNC has received numerous inquiries about organizing additional local support groups in different areas of the United States. SPOHNC is always available to help and guide individuals in the development of these new support groups for oral and head and neck cancer patients.

Until ways are found to profoundly reduce the occurrence and severity of oral and head and neck cancer, a patient support organization, such as SPOHNC, is a vital component of the healing process for these patients. Such an organization can have an enormous positive impact on meeting the psychosocial needs of oral and head and neck cancer survivors as well as preserving, restoring, and promoting their physical and emotional health.

As for me, I continue to learn about my disease in hopes of finding new information that I can pass on to many people who are newly diagnosed with oral and head and neck cancer. Soon I will celebrate the tenth anniversary of my surgery and “cure.” During the last ten years my glass has most definitely been “half full.” Hopefully it will continue to be so as I continue my journey of love, hope and survival.

My very best wishes,

Nancy E. Leupold
President & Founder
SPOHNC

For more information about SPOHNC, our newsletter, News From SPOHNC and our “Survivor to Survivor” network, please contact me at:

SPOHNC
P.O. Box 53
Locust Valley, NY 11560-0053.