As young survivors of the modern era of cancer treatment enter the third and fourth decades of their lives, they find themselves poster children for the hope of medical progress -- and also for the toll taken by cancer's toxic treatments.
The cure rate for childhood cancer is one of 20th century medicine's greatest success stories. Before 1970, few children with cancer made it. Today, nearly 80% of children who have cancer are cured, according to the American Cancer Society's 2008 statistics. Of the 11 million American cancer survivors, 270,000 have survived childhood cancer.
For The Record
Los Angeles Times Wednesday, May 28, 2008 Home Edition Main News Part A Page 2 National Desk 3 inches; 115 words Type of Material: Correction
Childhood cancer: In a Health section article Monday on survivors of childhood cancer, Dr. Jacqueline Casillas was referred to as director of the UCLA-Livestrong Survivorship Center of Excellence. She is associate director; the director is Dr. Patricia Ganz. The article said the UCLA-Livestrong center was in the Mattel Children's Hospital. It is part of UCLA's Jonsson Comprehensive Cancer Center. The same article said that a study of childhood cancer survivors that found a five to 10 times greater risk of heart disease in early adulthood (compared with healthy siblings) was reported this month at a meeting of the American Society of Clinical Oncology. The findings, released in advance of the meeting, will be presented June 3.
For The Record
Los Angeles Times Monday, June 02, 2008 Home Edition Health Part F Page 9 Features Desk 3 inches; 113 words Type of Material: Correction
Childhood cancer: In a May 26 article on survivors of childhood cancer, Dr. Jacqueline Casillas was referred to as director of the UCLA-Livestrong Survivorship Center of Excellence. She is associate director; the director is Dr. Patricia Ganz. The article said the UCLA-Livestrong center was in the Mattel Children's Hospital. It is part of UCLA's Jonsson Comprehensive Cancer Center. The same article said that a study of childhood cancer survivors that found a five to 10 times greater risk of heart disease in early adulthood (compared with healthy siblings) was reported this month at a meeting of the American Society of Clinical Oncology. The findings, released in advance of the meeting, will be presented Tuesday.
But they have not survived unscathed.
In a kind of cosmic kick in the pants, the treatment that once saved them can put their health at risk for the rest of their lives.
Cancer therapies injure, starve or kill healthy cells along with malignant ones, and as a consequence, survivors have a heightened risk of health problems, including early heart attacks, second cancers, stunted growth and infertility.
"It really hits home when you see a young adult who comes in with congestive heart failure because of their radiation exposure," says Dr. Jacqueline Casillas, pediatric oncologist and director of the UCLA-Livestrong Survivorship Center of Excellenceat Mattel Children's Hospital.
The developing brain -- and psyche -- can be affected as well. Radiation to the brain can result in a drop of 20 or more IQ points, causing learning disabilities for some. And while some cured youngsters enter adulthood feeling a renewed sense of purpose, others must deal with lingering bitterness and trauma from their treatment, which can emerge as depression or anxiety when they become adults.
Doctors are using the experiences of these young survivors to try to make things better for new generations of pediatric cancer patients. They are also coming to realize they must do better by young people whose cancer lies behind them. Only recently is the medical community understanding the importance of lifelong health monitoring to help them avoid, or detect early, the host of medical risks that could lie in their path.
That often isn't easy. By the time the consequences hit, many young survivors have worked hard to forget the cancer experience. "Some survivors of childhood cancer, when they become adults, don't ever want to see another doctor again," says Anne Kazak, director of the department of psychology at the Children's Hospital of Philadelphia.
Later effects vary
The long-term consequences of cancer treatment vary tremendously, depending on the type of treatment, dose of drugs or radiation, and age and sex of the child.
Children who were treated with radiation to the brain are at future risk for growth hormone deficiency, learning deficits, seizures, strokes and cataracts. Those whose chests were radiated are at risk for breast cancer, thyroid cancer and lung cancer; those who received radiation in the pelvic area could suffer bladder disease, kidney disease or infertility.
Various chemotherapy drugs are linked to infertility, early menopause in females, leukemia, kidney disease, hearing loss, heart disease and lung disease.
Precise statistics vary, because combinations of drugs, or drugs paired with radiation, can increase the risks, as do higher treatment doses.
But it's known that up to half of females who received high doses of chest radiation, for example, will have breast cancer later in life (and should have a mammogram every year starting at age 25).
And a study of 14,000 childhood cancer survivors, reported this month at a meeting of the American Society of Clinical Oncology, found a five to 10 times greater risk (compared with healthy siblings) of developing heart disease in early adulthood.
Children treated for leukemia at preschool age are four times more likely to be enrolled in special education programs than their siblings, according to research cited in a 2003 Institute of Medicine report called "Childhood Cancer Survivorship: Improving Care and Quality of Life."
Studies have also found that symptoms of post-traumatic stress such as nightmares or flashbacks affect up to 40% of childhood cancer survivors -- with 16% of survivors receiving a diagnosis of full-blown post-traumatic stress disorder. And 17% of young survivors suffer from depression, anxiety or insomnia, a rate roughly twice what is seen in people their age who did not have cancer.
The tragic bottom line is that about two-thirds of childhood cancer survivors experience at least one late health effect of treatment, and for more than one-quarter of survivors it is severe or life-threatening, according to a 2006 report in the New England Journal of Medicine.
Researchers have begun studying these grown-up "miracle" kids, the ones who made it at a time when thousands like them didn't, to find ways to make survival less risky for today's young cancer patients.