Comprehensive Care of Late Effects of Childhood Cancer
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Rebecca Freeman, 23 years old, is a survivor of osteosarcoma of the right leg who underwent a below-the-knee amputation. She is a senior in college and loves photography.
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UAB's Taking on Life After Cancer Clinic (TLC) offers comprehensive care for survivors of childhood cancer. The National Cancer Institute estimates that 1 in 330 children will develop cancer before they reach 20 years. The more than 75% who survive face a wide range of late sequelae despite oncologists' efforts to consider future quality of life during treatment. "Many long-term survivors of pediatric malignancies have no serious late effects, but for those who do, early diagnosis is crucial," says UAB pediatric oncologist Kimberly Whelan, MD, MSPH.
In 1993 the National Cancer Institute began the Childhood Cancer Survivor Study (CCSS) with a cohort of 14,000 patients who had a pediatric malignancy between 1970 and 1986. (Cancer treatment has advanced considerably in recent decades, and in 2007 investigators began enrolling 14,000 adults treated for childhood cancers between 1987 and 1999.) CCSS data have identified a number of potential late effects, such as premature menopause, stroke, and second cancers.
"Childhood cancer survivors are three times more likely to experience chronic health issues," says Whelan. Damage to the heart, lungs, kidneys, and other organs, cognitive deficits, and compromised fertility may transpire, depending on treatment type and duration. Radiation can cause neurocognitive problems, vision and hearing defects, and endocrine dysfunction. Depending on their therapy, up to 40% of survivors may have endocrine toxicity affecting growth or reproductive capacity. Heart damage secondary to radiation may occur in those with soft tissue sarcomas, those with Hodgkin disease, and in persons with brain tumors who undergo spinal irradiation. "Some types of chemotherapy, especially anthracyclines, also can damage the heart," she says. Many of these patients are at risk for secondary cancers such as skin cancer.
Survivors should receive attentive, long-term follow-up with clinicians who are well versed in these conditions, Whelan says. TLC follows the Children's Oncology Group long-term guidelines for survivors of childhood, adolescent, and young adult cancer. "We know the specific risks inherent in chemotherapy and radiation regimens and tailor screening and education for our patients," she says. Survivors maintain a relationship with their oncologist, who screens for recurrent cancer.
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Antonio Dodd was diagnosed with rhabdomyosarcoma of the left leg when he was 2 years old. He is 11 years old and loves to play football.
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TLC physicians begin seeing patients 2 years after therapy. Patients have annual or biennial visits well into adulthood. TLC provides psychological services, pulmonary and cardiac screening, endocrine evaluations, and more. "Our patients often have neuro-psychological problems, such as difficulty navigating their school system. We interact with schools to ensure our patients are properly accommodated," says Whelan, who sends a thorough letter to the primary care physician with the clinic's recommendations and details about potential late effects.
CCSS data indicate that most long-term survivors do not receive recommended follow-up care (Ann Fam Med. 2004;2[1]:61-70). "The advent of late effects increases with age, just when follow-up care declines," she says. "Our clinic's goal is to focus on the unique needs of childhood cancer survivors to improve quality of life and detect and treat late effects as early as possible. Most childhood cancer survivors go on to live happy, normal lives."
For more information contact Dr. Kimberly Whelan at 1-800-UAB-MIST or at mist@uabmc.edu