The story about SPOHNC
Head and Neck Cancer is the term given to a variety of malignant tumors that may occur in the head and neck region, namely the oral cavity, the pharynx (throat) paranasal sinuses and nasal cavity, the larynx, thyroid, and salivary glands as well as lesions of the skin of the face and neck and the cervical lymph nodes. Tumors of the brain are usually excluded from this definition as they are primarily treated by neurosurgeons and associated specialists whereas head and neck cancers are treated by otolaryngologists and head and neck surgeons.
The American Cancer Society estimates that there are more than 60,000 Americans diagnosed with head and neck cancer each year, excluding superficial skin cancers, but including cancer of the larynx and thyroid. Although the percentage of oral and head and neck cancer patients in the United States is only about 5% of all cancers diagnosed, the importance of this disease is heightened by the fact that functional problems and aesthetic differences are commonly associated with this type of cancer and its treatment.
There are presently more than 500,000 survivors of oral and head and neck cancer living in the United States. Unfortunately, many survivors of this disease continue to have side effects from treatment and may look for someone to help them cope with the physical problems as well as the psychosocial problems concerning quality of life. Based on the size of the survivor population, there is a definite need for an organization such as SPOHNC.
I am one of those survivors who was looking for support nineteen years ago. When I began searching for information following my diagnosis, I found there was very little literature to be had. I was discouraged, frustrated and angry. Even though my family and friends were supportive, I felt very much alone with little information to encourage me. I needed to speak with someone who "had walked in my shoes."
Until 1991, there were few support groups specifically for oral and head and neck cancer patients in the U.S. Survivors found that coping with oral and head and neck cancer could be extremely difficult. Not only could the diagnosis be life-threatening, but many patients as a result of the disease and its treatment had to also endure alterations in facial and neck appearance and dental problems, as well as alterations in speech, sight, smell, chewing, swallowing and taste perception. Survivors and their families needed a support group in which they could share their experiences and problems and help one another.
In 1991, with the encouragement of David P. Wolk, MD a head and neck surgeon and James J. Sciubba, DMD, PhD, Director of Dental Care at Long Island Jewish Medical Center on Long Island, NY, I founded Support for People with Oral and Head and Neck Cancer, Inc. (SPOHNC). As a self-help organization involved in the development of programs of support, SPOHNC, a not-for-profit 501 (c) (3) organization, has become a vital component of the healing process for head and neck cancer patients. It has had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. A support organization, such as SPOHNC, can also be the foundation for patient and family education and awareness.
Due to recent and ongoing changes in the treatment of oral and head and neck cancer, patients and their families are becoming increasingly more active in researching and identifying their options for care. The capability of patients to more actively participate in their own care has increased the need for education and awareness of the various and oftentimes overwhelming medical options that are available to them.
Consequently, during the past nineteen years, SPOHNC has concentrated on providing current information for oral and head and neck cancer patients who are trying to gain a better understanding of their illness and their lives. We strive to accomplish this through our newsletter, News From SPOHNC, published eight times each year from September through May. Medical information, authored by healthcare professionals and written in lay terminology, is disseminated to patients, their families and friends, and members of the healthcare community. Additional information from research institutes, cancer centers, universities, governmental agencies, medical groups and from patients themselves is also included in the newsletter. News From SPOHNC helps to increase awareness of the many ongoing issues related to head and neck cancer and to address the broad medical, emotional and humanistic needs of patients empowering each to take an active role in his or her recovery.
SPOHNC distributes newsletters and articles of interest to survivors and newly diagnosed patients across the US and abroad. In the spring of 2005, SPOHNC published its first book, Eat Well – Stay Nourished, a Recipe and Resource Guide for Coping with Eating Challenges. This book was followed by SPOHNC’s second publication, We Have Walked In Your Shoes, A Guide to Living with Oral and Head and Neck Cancer, written in collaboration with Bristol Myers Squibb and ImClone Systems. This book contains general information about head and neck cancer, radiation and chemotherapy and dental care for head and neck cancer patients. It has been distributed to more than 40,000 people in the United States. SPOHNC’s third book, Meeting the Challenges of Oral and Head and Neck Cancer, A Survivor’s Guide was published in April 2008.
Local SPOHNC chapters are very important to our constituents. Since September of 2000, 90 chapters have developed throughout the United States: some quite large and others small. At the present time, we have several more in development. SPOHNC provides assistance, guidelines and materials to individuals, and/or healthcare professionals, interested in starting new support groups (chapters) for oral and head and neck cancer survivors.
On April 21, 2003, SPOHNC activated its new National Survivor Volunteer Network (NSVN). This service provides "connections" from individuals to survivor volunteers and is available by telephone and email. Through these "connections" survivor volunteers are able to provide information, encouragement, support and hope to survivors and their families based on their own experiences. We presently have more than 145 survivor volunteers ready to assist others. Since the activation of the NSVN close to 1,000 "matches" have been made. The feedback from all parties has been very positive. To become a survivor volunteer or to be "connected" to a survivor volunteer, please call 1-800-377-0928 or send an email to: email@example.com.
Raising awareness of oral and head and neck cancer is an important part of SPOHNC's mission. To date we have distributed more than 40,000 awareness ribbons and enamel pins within the United States. SPOHNC has also published a self-exam for head and neck cancer that includes possible symptoms of the disease. In 2004, SPOHNC was honored to be chosen the official charitable beneficiary of the Neiman Marcus Christmas Book. Through this Christmas catalogue, SPOHNC raised awareness of oral and head and neck cancer to more than 2 million people. "Awareness and early detection can lead to cure."
Copies of our SPOHNC brochure providing information about the basic objectives of SPOHNC's program and a listing of its services are available to individuals and healthcare professionals, and healthcare facilities. A membership form is included in the brochure.
We hope that you will find the information on our web site of help during your journey. Please remember, you are not alone. Many have "walked in your shoes" and SPOHNC is here to assist you.