Naomi Bartley was 7 when she was diagnosed with acute myelogenous leukemia, an aggressive and often fatal form of childhood leukemia. Although doctors rated her chance of survival at just 5 percent, a three-pronged attack of chemotherapy, radiation and a bone marrow transplant allowed Naomi to beat those odds.
Now 21, she studies biology at the University of Ottawa, Canada, and works as a research technician on cancer vaccines at Ottawa Civic Hospital. With her creamy skin, shiny blond hair and natural poise, she is the picture of health.
That picture, however, doesn't tell the whole story: the story of how radiation treatments stymied her bone growth and scorched her eyes and her ovaries, causing cataracts and chronic menstrual irregularities, or how a chemotherapy drug left her with permanent heart damage.
Naomi's story is the bittersweet tale of many childhood cancer survivors. They fought for their lives and won, but must pay the price through lifelong health complications.
That price is well worth her daughter's life, said Naomi's mother, Ruth Hoffman, national executive director of Candlelighters Childhood Cancer Foundation in Kensington, Maryland.
"Would I ever have not treated my daughter? Absolutely not," Hoffman said. "She's wonderful, she's bright, she's beautiful, and I'm lucky I still have her in my life."
Yet Hoffman and other experts are pushing for greater awareness of childhood cancer's late effects in the hope that survivors who know of their health risks will be better prepared to manage them.
The Cost of Curing
Elation over rising cure rates for childhood cancer sometimes obscures the side effects of survival, which can include heart damage, infertility, vision problems, learning disorders and second cancers, experts say.
Childhood cancer, once a death sentence, is now curable in 72 percent of cases, with survival rates over 90 percent for some cancers, according to a study published by University of Michigan researchers in the journal Medical and Pediatric Oncology in 1999.
Many survivors, however, are unprepared for the potential health complications of their cure, or for the lifelong checkups and follow-up care they require.
In their book "Childhood Cancer Survivors," authors Nancy Keene, Wendy L. Hobbie and Kathy Ruccione explain that some survivors don't mention the side effects to their doctors because they may be eager to put cancer behind them, or fear appearing ungrateful by complaining about ongoing ailments.
Doctors, focused on a cure, sometimes lose sight of its costs. And since many of the side effects don't show up for years or decades after treatment, patients and their physicians don't always connect them to childhood cancer, said Dr. Anna Meadows, a professor of pediatrics at the University of Pennsylvania School of Medicine and senior oncologist at Children's Hospital of Philadelphia.
Doctors may also be cautious about overstating the risks of late effects for fear that patients or their parents may refuse life-saving treatment.
"Above all, oncologists are going to want to cure children first," said Hobbie, a nurse practitioner and coordinator of the childhood cancer follow-up program at Children's Hospital of Philadelphia.
As the ranks of survivors have swelled, however, more attention has focused on their long-term health. Many hospitals that treat childhood cancer, such as Children's Hospital of Philadelphia, Childrens Hospital Los Angeles and Children's Hospital Medical Center of Cincinnati, have follow-up programs for survivors. And a study of nearly 14,000 children and young adults who survived childhood cancer is underway at the University of Minnesota School of Medicine.
Types of Side Effects
The likelihood of long-term effects depends on the type of cancer, the child's age and the type and dose of treatment, experts say. About half of childhood cancer survivors will have complications that affect their quality of life, says Dr. Smita Bhatia, a pediatric oncologist at City of Hope National Medical Center in Duarte, California, and chairwoman of the late-effects committee of Children's Oncology Group, a national association of pediatric cancer specialists.
Here are some of the potential late effects of childhood cancer treatment, and ways to reduce these risks.
- Heart problems: Chemotherapy with anthracycline drugs and some types of radiation can damage the heart muscle, or pericardium - the sack surrounding the heart - say child cancer experts, increasing the risk of heart failure. Whenever possible, oncologists now use lower doses of anthracylines and radiation or shield the heart during radiation treatments. Patients at risk for heart damage should receive regular heart screenings, experts advise.
- Second cancers: The treatments used to cure cancer can sometimes cause cancer themselves. The University of Minnesota researchers found that childhood cancer survivors are six times more likely to develop additional cancers than other children or young adults, according to a report published in April 2001 in the Journal of the National Cancer Institute. The report is one of several released so far out of the ongoing study of childhood cancer survivors.
But the study's director Ann Mertens, PhD, said that risk translates into just a handful of extra cancers: Only two out of 100 survivors are likely to get a second cancer over a 10-year period.
The risk is higher in certain types of cancer. For instance, Bhatia said, girls who receive chest radiation for Hodgkin's disease have a 30 percent chance of getting breast cancer before they are 40. One-third of Hodgkin's disease patients in the University of Minnesota study also suffered thyroid problems, including thyroid cancer, according to a 2000 report in The Journal of Clinical Endocrinology and Metabolism.
To lower those risks, doctors may reduce the use of chest radiation, shield the thyroid gland or avoid chest radiation entirely in girls with Hodgkin's disease. Girls who receive chest radiation should learn to perform breast self-exams and schedule regular mammograms.
- Hormonal problems and infertility: Radiation and some chemotherapeutic drugs can interfere with sexual development and cause infertility in childhood cancer patients. Girls can also experience menstrual problems or early menopause. To protect against those problems, doctors may surgically move the ovaries outside the field of radiation during treatments to the lower abdomen, Bhatia said.
- Learning disorders: Patients who have had radiation to the head are at risk of learning disorders and decreased IQ, particularly if they received radiation to the brain earlier than three years of age, Bhatia said. "At a younger age, the brain is still undergoing development, and that can be permanently harmed by receiving radiation," she said. Some forms of chemotherapy for leukemia can also cause learning disorders. Parents of these children should closely watch their school performance and seek speech and language therapy or other academic help for their children if problems arise.
- Other side effects: Some cancer treatments can damage the eyes, leading to cataracts, retinitis or glaucoma, child cancer experts say. Some treatments may also affect hearing, reduce bone growth and density, constrict the lungs and make the skin sensitive to scarring and sun damage. Patients at risk should receive regular screenings for these problems.
Treatment and Follow-Up
Treatment for childhood cancer follows clinical protocols that control the dose and timing of radiation and chemotherapy to achieve the highest chance of cure with the lowest risk of late effects, child cancer experts say.
"The ultimate aim of treatment still needs to be what's needed to cure the child," Hobbie said.
In dealing with the risks of childhood cancer treatment:
- Ask about side effects. Although some risks of treatment may be unavoidable, your doctor should explain any risks during the informed consent process, Hobbie said. "If you know [of risks] early enough, then you can head them off," Hoffman said.
- Explore options with your oncologist. Inquire about participating in clinical trials, which aim to fine-tune standard cancer treatments for greater effectiveness and safety, Bhatia said.
- Keep records of your child's treatment. The hospital providing your care should give you details about the dose and location of radiation, dose and type of chemotherapy, and any surgery performed.
- Maintain a follow-up schedule after treatment ends. Your child should receive regular physicals, and screenings for any particular side effects associated with her or her treatment. As your child grows up, make sure he or she understands the risks of previous cancer treatments and continues follow-up care with an oncologist, internist or other specialist knowledgeable about the long-term effects of childhood cancer.
- Because childhood cancer survivors may be more susceptible to conditions like heart disease or second cancers, teach your child to avoid smoking, use a sunscreen of SPF 15 or higher and avoid prolonged sun exposure, and develop healthy eating and exercise habits.
As you confront these challenges, don't lose hope. "[We're] in an era of cure," Hoffman said. "Cure is available, and that in itself is a wonderful miracle that wasn't available 20 years ago."
Resources
"Childhood Cancer Survivors: A Practical Guide to Your Future," by Nancy Keene, Wendy Hobbie and Kathy Ruccione (2000, O'Reilly & Associates)
Candlelighters Childhood Cancer Foundation
3910 Warner Street
Kensington, MD 20895
(800) 366-2223
http://www.candlelighters.org
For names of other organizations that may help, please see "Other Sources."
Deborah Sullivan Brennan is an Idyllwild, California-based writer specializing in health and environmental issues. She is a regular contributor to the Los Angeles Times and to several health Web sites, including Apria.com.
