A New Cancer Specialty: Follow-up for Long-term Survivors
Diagnosed with inoperable Hodgkin lymphoma in 1978 at age 21, Eileen Gould received what was then state-of-the-art treatment: massive doses of radiation to the chest, abdomen, and pelvis. In addition, her spleen was removed. The treatment cured her lymphoma, which has never recurred.
Years later, she recounts, she was plagued by persistent fatigue and lack of endurance. Climbing a flight of stairs left her winded. Several doctors could find nothing wrong. Then she stumbled on an early online support group for long-term survivors of Hodgkin lymphoma, many of whom reported symptoms similar to hers.
"I thought, oh my gosh, I'm not crazy after all," says Eileen, 51, who lives in New York City. Nearly 20 years after her lymphoma diagnosis, a cardiologist confirmed that she had heart damage caused by large doses of radiation to her chest. Today Eileen lives with multiple chronic and late effects from the treatment that saved her life, including early menopause, hypothyroidism, chronic orthostatic hypotension, and a compromised immune system due to the removal of her spleen. She's had basal-cell skin cancers and in situ (noninvasive) breast cancer.
Decades of research on survivors of childhood cancer have shown that the effects of cancer and its treatment can last a lifetime. The nature of these effects varies widely and depends on many factors, including the type of cancer treated, the way it was treated, and the patient's age when treated. More recently, studies have begun to document long-term and late effects of cancer treatments in cancer survivors diagnosed and treated as adults. A 2005 Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, noted that few survivors currently receive comprehensive, coordinated long-term follow-up care. Such care may reduce the occurrence or severity of late effects through screening and appropriate preventive or early interventions.
Many children's hospitals and cancer centers with pediatric oncology programs have long had dedicated follow-up clinics for survivors of childhood and adolescent cancer, but these programs often follow survivors only until they reach their early 20s. To date at least eight new programs, supported by grants from the Lance Armstrong Foundation as Survivorship Centers of Excellence, have been created around the country that focus on the needs of older survivors and on long-term follow-up for survivors of cancer diagnosed in adulthood. Eileen Gould is a patient of one such program, located at Memorial Sloan-Kettering Cancer Center (MSKCC).
Although the structure of these programs varies, common features include leadership by a doctor knowledgeable about cancer late effects, state-of-the-art screening tailored to each patient's specific late-effect risks, referrals to appropriate specialists, wellness education, and research to better characterize not only the follow-up care needs of long-term cancer survivors but also the most effective approaches to providing that care.
"Post-treatment care is a new and evolving area of research," says Julia Rowland, director of NCI's Office of Cancer Survivorship. "We are only just developing the evidence base for what long-term follow-up care should look like. Examining the impact of such programs on the cost of care, and more importantly on survivors' ultimate health-related and quality-of-life outcomes, must be a critical part of this research."
A challenge for many long-term cancer survivors is lack of access to the records documenting the treatment they received. Eileen is fortunate to have all of her records, which her oncologist sent to her when he retired from practice. Using these records, Dr. Kevin Oeffinger, her physician and director of the MSKCC program for adult survivors of childhood and adolescent cancer, prepared a plan for her that documents the type of cancer she was treated for, the doses of radiation she received, the long-term or late effects that can result from that treatment, and the types and frequency of screening and monitoring she should receive. This approach is in line with what the IOM report described as "survivorship care plans," which it recommended for every cancer patient completing primary treatment.
"It's enormously helpful when I go to see my other doctors," says Eileen.
An avid tennis player before her cancer diagnosis, Eileen says she still enjoys an occasional doubles match. Despite her many health challenges, she says she's grateful to have survived this long. "I was so happy when I reached my 50th birthday - I never thought it would happen."