Life and Health After Childhood Cancer
Survival for children with cancer has improved dramatically, but longer life has revealed long-term health concerns.
By Sharon Reynolds
Megan Alexander had a heart attack before she turned 2.
The culprit: A chemotherapy drug used to treat rhabdomyosarcoma, the rare cancer she was diagnosed with when she was only 10 days old. The drug, Adriamycin (doxorubicin), had irreparably damaged her heart tissue. But it had also helped save her life, as did the radiation treatment she received.
Today Alexander, 24, of Chicago, returns every year to West Michigan Heart, a clinic in Grand Rapids that is now part of Spectrum Health, for tests more familiar to a senior citizen with heart valve disease than to a young woman just starting her career. She also manages lingering physical challenges from her illness and treatment for the brain tumor that had grown in her left frontal lobe. Despite residual weakness and mobility issues on the right side of her body, Alexander walks for exercise every day with her service dog, Blue, who also rides with her on Chicago’s elevated train to her job as a cancer support specialist with Imerman Angels
, a nonprofit that connects cancer patients with mentors and caregivers.
In her work, Alexander matches newly diagnosed patients with mentors who have been through treatment. She has also mentored the parents of two children who, like her, were diagnosed with brain tumors. “I assure them that I’m still here. I survived the tumor, and I’m doing great,” she says.
A Medical Success Story
The treatment of pediatric cancers has been one of the great medical success stories of the past 50 years. A half century ago, only about 30 percent of children with cancer survived. Now, more than 80 percent of children diagnosed with a pediatric cancer will become long-term survivors. With this achievement has come rising awareness that successful treatment can come with costs.
“Back in the 1970s, we started to recognize the adverse consequences of some pediatric cancer therapies, as survival rates were improving and cancer survivors increased in number,” says Leslie Robison, an epidemiologist at St. Jude Children’s Research Hospital in Memphis, Tennessee, who has studied pediatric cancer survivors for more than 40 years. But it was hard to piece together a comprehensive understanding of the long-term consequences of treatment from the small number of case studies appearing in the 1970s and 1980s, he says.
To fill in the gaps, in 1994 Robison and his colleagues launched the Childhood Cancer Survivor Study (CCSS), which has tracked the health status of more than 14,000 adult survivors of childhood cancer who were diagnosed between 1970 and 1986. This huge project, along with smaller studies at survivorship clinics around the world, has allowed oncologists to develop a basic road map for what young survivors might experience as they grow older.
Many of these long-lasting side effects, often referred to as late effects, are not unique to children. If a potential consequence of chemotherapy or radiation therapy takes 20 years to become evident, however, adults treated in their 60s may not live long enough to experience it. But today, children treated for cancer most likely will live to an age when late effects can appear.
Results from the CCSS and smaller studies have found that more than 60 percent of adults treated for cancer when they were children develop at least one chronic health condition. While some of these are minor and do not affect quality of life, others are severe and can be life-threatening. A recent study of more than 1,700 adult survivors of childhood cancer published in the June 12, 2013, Journal of the American Medical Association estimated that about 80 percent would develop a serious, disabling or life-threatening chronic health condition by the age of 45. Conditions associated with cancer treatments included infertility, hormone irregularities, heart attack, obesity, diabetes, nerve damage and kidney dysfunction.
Addressing Late Effects
A discussion of the potential late effects of cancer treatment may get drowned out in the panic surrounding a cancer diagnosis. Talking about late effects “is a standard part of our discussion of therapy for children with cancer,” says Melissa M. Hudson, a pediatric oncologist who directs the Cancer Survivorship Division at St. Jude. But if “you’ve just been told that your child has cancer, it’s very hard to hear anything other than ‘my child has cancer.’ ”
Compounding the problem, information about late effects may not be remembered years or decades after treatment. Parents also vary in the amount of information they pass on to their children as they grow older, says Hudson. Some parents make sure their children know everything about their treatment and its potential side effects; others shelter their children completely, figuring they’ve been through enough already.