From publications to one-on-one interactions, SPOHNC offers caregivers, patients and survivors of oral, head and neck cancer support they need to navigate their diagnosis.
Support for People with Oral, Head and Neck Cancer (SPOHNC) was founded 25 years ago, when oral cancer survivor Nancy Leupold found support was scarce and inadequate. “I felt very much alone with little information to encourage me,” Nancy said in a recent retrospective. Nancy took it upon herself, with help from a head and neck surgeon and a dental specialist, to form the first support group, the foundation of SPOHNC, which would eventually grow to become the organization it is today — 25 years later.
SPOHNC’s mission is to provide every patient with oral, head and neck cancer with the support that is essential to help with ones cancer journey, through its resources and programs. With several publications, a monthly newsletter, matching programs for patients and caregivers and over 130 chapters of support groups across the country (with one in the works to begin in Sweden in the new year), SPOHNC has more than honored that mission.
SPOHNC’s current publications focus on helping newly diagnosed patients and survivors as they go forward to learn new coping skills that can overcome their initial feelings of helplessness and adopt of proactive attitude of survivorship. "We Have Walked in Your Shoes - A Guide to Living with Oral, Head and Neck Cancer" serves as an introduction to oral, head and neck cancer, with information about the symptoms and diagnosis, the types of treatment and common side effects. It also offers a section for patients to list their healthcare information, diet and nutrition and other resources. “Meeting the Challenges of Oral and Head and Neck Cancer: A Guide for Survivors and Caregivers” focuses on the needs of the survivor of oral, head and neck cancer as well as their caregiver, guiding them through survivorship and aftercare. Psychosocial issues are also common as patients struggle to adjust.Two volumes of “Eat Well Stay Nourished, a Recipe and Resource Guide for Coping with Eating Challenges” are filled with recipes that are geared toward those with eating and swallowing challenges, as well as tips for increasing caloric intake, often essential to a newly diagnosed patient or someone going through treatment. Nutrition is an essential component to a patient’s quality of life after being treated for head and neck cancer.
SPOHNC’s National Survivor Volunteer Network (NSVN) was created to help patients recently diagnosed with head and neck cancer become more knowledgeable and to gain inspiration and hope through others who have walked in their shoes. The bonds formed from this outreach are very strong, as survivors help patients go through the side-effects of treatment that can be extremely overwhelming. Patients are matched to survivor volunteers, and caregivers are matched to other caregivers, who are dealing with the same diagnosis and treatment. There are currently more than 225 volunteers waiting to be matched. Participants communicate one-to-one for support, encouragement and ultimately hope. To be matched with a survivor volunteer, patients or caregivers can contact SPOHNC directly at 1-800-377-0928 or firstname.lastname@example.org.
“Your Cancer Game Plan,” is a recent collaboration between SPOHNC and Buffalo Bills legend and head and neck cancer survivor Jim Kelly, The Head and Neck Cancer Alliance, Savor Health and Merck. This campaign featured a national webinar where all participants gathered to share the important points of a game plan for the patient moving forward with head and neck cancer. Key elements of this campaign included communication, emotional support and nutrition. Visit SPOHNC’s website to view the webinar and additional information that will be coming soon.
One of the most important things, as pointed out by Mary Ann Caputo, executive director of SPOHNC, is that patients can stay positive and have hope.
“It’s the key to good health and communication. Embracing the community, family and friends will provide a solid support system." Speaking to other patients and survivors allows patients with oral, head and neck cancer to understand the complexities of this disease, and not only educate them, but encourage and inspire them. "It is important, Caputo pointed out, “for patients to be their own advocate and empower themselves to overcome any cancer diagnosis and live life to the fullest.”
SPOHNC’s outreach programs are a great resource for this community. Since 1991, many patients and their loved ones have reached out to the many programs and services that SPOHNC offers.
To learn more about the programs and services, please visit spohnc.org.