Hodgkin's disease survivor : Facing life beyond cancer
After two bouts with Hodgkin's disease as a teenager, Curt LaBombard was ready to escape. He finished college in New Hampshire, then took off for work in Greenland, Antarctica, and Colorado—far from the site of his treatment and those who had supported him. But after some 15 years of adventure, LaBombard began wondering about the long-term effects of his chemotherapy and radiation—and whether there was a connection with some of the health problems he'd faced over the years, such as chest pains and thyroid irregularities.
Learning about Dana-Farber's survivorship programs on the Internet this past year, LaBombard booked an appointment here in April. He met with Rich Boyajian, RN, MS, a nurse practitioner in the Institute's Lance Armstrong Foundation Adult Survivorship Clinic, and discussed his medical history and possible future complications.
"It was kind of a release for me," says LaBombard, now 35 and working as a carpenter in Portland, Maine. "I've had very little contact with other survivors since my experience in the late 1980s. It was nice to find out there's a whole group of people out there who are working toward the same goals. When I was originally treated, I was not told much about what to expect," he adds. "I needed to bring closure to some of the things that had happened to me."
Nationwide, cancer survivors like LaBombard are coming to similar conclusions and searching for more information about their health status, whether it is months, years, or decades after finishing treatment.
At Dana-Farber, they are doing so through the Perini Family Survivors' Center, an umbrella organization for three clinics: the David B. Perini, Jr. Quality of Life Clinic for those who have endured childhood cancers; the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic for survivors of pediatric brain tumors; and the Lance Armstrong Clinic for individuals diagnosed as adults, or who've grown up and choose to transfer their care from the Perini Clinic to the adult setting. (In addition, many adult survivors continue to see their physicians within the disease centers where they were treated, and may receive additional support through the Perini Center.)
"It has taken us a while to create survivors, and now we have to take care of them."
—David C. Fisher, MD
The center is one of only a handful in the United States designed to help improve the quality of life for survivors, defined by many experts and advocates as anyone who's ever been diagnosed with cancer. Early detection and better treatments have translated into a growing membership in this group. Today there are 10 million people in the U.S.—compared to 3 million in 1971—who are living with and beyond their disease, a number that is expected to swell as the population ages and cancer increasingly becomes a chronic, rather than fatal, illness. This phenomenon has prompted cancer centers and other facilities to rethink their approaches to delivering care, and the federal government to elevate survivorship as a research priority.
"It has taken us a while to create survivors, and now we have to take care of them," says Dana-Farber's David C. Fisher, MD, who oversees the Lance Armstrong Clinic's lymphoma effort. "There are studies and data about the long-term side effects associated with cancer treatments, but we have a lot to learn about how to follow survivors."