Peter Rieker was always thinking of others. Even as his last days as a head and neck cancer patient drew near, one of his final acts was to make life easier for other patients with his diagnosis. Before his death in 2013, he and his wife, along with the couple’s two sons and countless family members and friends, started the Johns Hopkins Head and Neck Cancer Survivorship Program with personal gifts and donations requested in Rieker’s obituary.
Since then, the thousands of dollars collected for this program have paid for a variety of services for people living with head and neck cancer, a group of diseases that receives little attention compared to other cancers, such as breast, lung and prostate.
“These are still uncommon tumors to the population at large,” says head and neck surgeon Christine Gourin. “Head and neck cancers only make up 4 percent of all cancers. These can be isolating diseases to get.”
That’s why a major focus of this program is Head and Neck Cancer Survivorship and Education Day, an event that Amy Brady has organized for seven years. As manager of the Johns Hopkins Head and Neck Cancer Multidisciplinary Program, as well as the Survivorship Program, she’s seen firsthand the despair patients can experience when they’re first diagnosed and the empowerment they can feel once they learn more about their disease.
“It is the fear of the unknown that causes much of the anxiety for our patients,” she says. “Educating patients about the disease and its causes as well as the types of treatment is the key to giving the patients power and control over their disease.”
Head and Neck Cancer Survivorship and Education Day fills that need by giving patients, caregivers and the general public insight on head and neck cancers in a variety of ways: through talks by physicians, nutritionists, dentists and speech/swallow specialists on current head and neck cancer topics; by providing free educational materials on everything from transportation and housing during treatment to support groups and what to expect during your treatment; having a panel of head and neck cancer specialists available to answer questions; and many opportunities to socialize with other attendees, where lasting relationships are often formed, Brady says.
Steven Clem, a Johns Hopkins patient who lost his tongue and voicebox to cancer in 2008, has gone to many of these events and has served as a guest speaker. He also regularly meets with patients who need similar surgeries to survive their cancers.
“Over the last four to five years, I have met many people there to talk to,” he says. “I tell them that there is a good, if not great, quality of life after surgery. It’s my way of paying back and paying it forward.”
The Survivorship Program also funds a monthly support group for head and neck cancer patients and their spouses or caregivers, run by Johns Hopkins speech-language pathologist Kim Webster. Johns Hopkins patient Sam Digiacomo has become a regular attendee after his laryngectomy for vocal cord cancer in 2011. Meetings are like miniature Education Days, he says, with speakers and a chance for patients to meet and talk.
“It might be months after treatment before you can get out of the house, but I think if you’re able, you should come,” he says of the support group. “It lets people know that they’re not alone. There are other people out there you can relate to.”
In the future, Brady says, the Survivorship Program will fund more efforts to educate patients, such as extensive information about these diseases on Johns Hopkins’ website, as well as ways to make their lives easier during treatment, such as helping to defray the cost of parking during radiation treatments, which necessitate daily trips to the hospital over the course of weeks.
“After a diagnosis of head and neck cancer, our patients’ lives are forever changed,” says Gourin. “The Survivorship Program is helping patients to navigate their new normal life on every step of this journey.”