Our senses are so fragile and easily taken for granted. The sights, smells and sounds of summer resonate with every Long Islander and remind us that we live in one of the most wonderful regions in the country. Imagine losing these gifts. Now imagine that losing them is the least of your problems.
Nancy Leupold was a teacher at the Mill Neck School for the Deaf for 18 years and had seen her share of challenges. Then fate threw her a curveball, turning Nancy from teacher into patient, survivor into advocate. Nancy was diagnosed with oral cancer in 1990 after a routine dental examination uncovered a lesion in her mouth. After surgically removing the lesion she also had to have 13 of her teeth extracted to eradicate all traces of the disease. Thankfully, she didn’t require follow-up radiation treatment, which can be devastating to the gums and bones in the mouth.
For Nancy and so many others affected by this disease, it was only the beginning. Oral cancer is a very visible type of cancer that can alter your face, the most exposed part of your body. “You can’t hide your head,” Nancy says sadly as we sit in her small but beautifully appointed office in Locust Valley. Nancy is an articulate woman who is measured in both her words and appearance, and appropriately serious about the work that she does.
A native of the area, Nancy’s reach now extends far beyond her home as she works tirelessly for those who have been affected by oral cancer. After her own ordeal she sought more answers about the disease itself and different avenues for mouth reconstruction, including implants and prosthesis. More than anything, it was guidance she looked for initially. “I asked my surgeon if there was a support group [for people with oral cancer],” Nancy remembers. And after she did some investigating, she found that there was none.
In the past, oral cancer was referred to as “the old man’s cancer” and was mostly diagnosed in those people who were heavy smokers or chewed tobacco. Within the past 10 years alone, the percentage of women diagnosed with this savage cancer has risen from 10 percent to a staggering 50 percent.
Nancy explains that most people who are diagnosed with this cancer are over the age of 50, and according to the Oral Cancer Foundation (OCF), younger people are now getting the cancer due to Human Papilloma Virus (HPV), and this group is the fastest-growing segment of the oral cancer population.
The death rate associated with this cancer is particularly high not because it is hard to discover or diagnose, but due to the cancer being routinely discovered late in its development. Often it is only discovered when the cancer has metastasized to another location, according to the OCF.
Nancy wanted to help others going through the treatment for these cancers to gain a better understanding of their illness and with the encouragement of Drs. David Wolk and James Sciubba, both affiliated with LIJ at that time, Nancy founded the first support group for people afflicted with oral, head and neck cancer, the only one of its kind in the U.S. Describing their first meeting held at LIJ in September 1991, Nancy remembers, “There were nine of us in the first group. I can still picture it. It was a beautiful coming together.”
Yet for all her accomplishments, Nancy’s reserved nature and humility seem to make her shun the limelight. It was Mary Ann Caputo, the Outreach Administrator of Support and future executive director for People with Oral and Head and Neck Cancer (SPOHNC), who contacted me about Nancy and described the huge support network that Nancy has put together across the U.S. in less than 10 years.
Nancy’s dedication to helping others has resulted in the formation of more than 85 SPOHNC support groups nationwide. “People have finally found a support group available to them,” she says proudly. “We’re all affiliated and it’s about people helping people.”
SPOHNC (aptly pronounced “spunk”) is a self-help non-profit that offers support to those afflicted and their families and helps to meet the psychosocial needs of patients. Nancy said that they don’t donate money to research because they put all of their efforts into the care of those directly afflicted with the disease. SPOHNC assists in local chapter development, and in 2003 they launched a National Survivor Volunteer Network that connects survivors with survivor volunteers to provide much-needed support, encouragement and hope. “We match volunteers with newly diagnosed people. It’s a buddy system. We’ve matched about 900 people in the last few years,” Nancy says.
The groups also seek to raise awareness for the disease, which includes a self-examination card and the distribution of awareness ribbons and enamel pins. They also publish a newsletter that includes up-to-the-minute information from the healthcare community, government, medical support groups and the patients themselves.
Nancy also found that there can be a lack of cooperation from the insurance companies that cover dental work, and she became an advocate for others trying to navigate the system. She helps them get the proper dental care and treatment required to make their life as normal as possible. Nancy says that she fought with her insurance company for more than a year before they approved the dental work necessary to fix her teeth. “You have to prove it’s medically necessary,” she says, baffled at their reluctance to help. “[To me] it’s the same thing as losing a hand.”
Nancy has built a network that helps more than 10,000 people annually through phone calls, e-mails, newsletters and their website. She believes that awareness and early detection can lead to a cure, but until that happens, Nancy and her network from SPOHNC rally around each other, drawing strength from their experience and giving hope to others.
For more information go to www.spohnc.org or call 1-800-377-0928.
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