US News and World Report
30 April 2001

Kids who beat cancer may face later health challenges

By Mary Brophy Marcus

Wayne Mei looks like just another 15-year-old kid: whiskerless, 5-foot-5, 136 pounds. Actually, he's 27. Mei battled leukemia from age 3 until he was 9. He won, but at a cost. The radiation and drugs destroyed his ability to grow facial hair, he says, "and I'm probably a lot shorter than I would have been." For the public-relations executive in Dallas, there is even more serious fallout from the treatments that saved his life: He cannot have children, suffers from back pain, and fights fatigue from chronic anemia.

Mei belongs to a burgeoning population of cancer survivors who are finding that the battle against the disease has left lingering health problems. Twenty-five years ago, only 1 of every 4 children with cancer survived. But in the 1970s, new chemo-therapy combinations started to make cures almost routine for some cancers, like Hodgkin's disease and childhood leukemias. Now the cancer survival rate for kids is closer to 3 in 4. At the same time, childhood cancer rates have been rising, by 10 percent over the past decade (chart). All this adds up to some 250,000 people who were treated for cancer in childhood and are now living with the aftermath of radiation, toxic drugs, surgery, and transfusions.

Kids are especially vulnerable to lasting effects because "they are developing organisms," says Julia Rowland, director of the office of cancer survivorship at the National Cancer Institute in Bethesda, Md. Researchers are learning that two thirds of all childhood-cancer survivors experience one or more physical or emotional aftereffects, often mild but sometimes serious or life threatening. To limit the damage, doctors are looking for new ways to tailor treatments to children. And the findings are convincing many experts that childhood cancer survivors, who usually bid their doctor goodbye after their five-year checkup, should be followed closely for a lifetime.

Not all the scars are physical. Children being treated for cancer "go through some very intense, physically and mentally painful procedures, and there can be major disruptions to their family life," says Wendy Hobbie, a pediatric oncology nurse practitioner and coordinator of the follow-up program at the Children's Hospital of Philadelphia. In a study published last December in the Journal of Clinical Oncology, Hobbie and colleagues detailed the results. As many as 75 percent of survivors experience bad dreams, anxiety, and other signs of post-traumatic stress disorder, similar to what war veterans report. For many, the trauma does not set in until young adulthood. "I never allowed myself to process how it affected me emotionally and behaviorally until I was in college," says Erika Rooks Wilgenburg, 27, a communications specialist from Grand Rapids, Mich. At age 10 she was diagnosed with a grapefruit-size tumor in her ovary and was treated with surgery and chemotherapy.

Harsh medicine. Physical effects can also be delayed. Radiation in childhood can lead to infertility later, as Mei discovered. And a report published in February by the Dana Farber Cancer Institute suggests that boys treated with cyclophosphamide, a drug used to destroy lymphomas and sarcomas, may also be sterile later in life because the drug kills sperm-making cells. The researchers say adolescent boys who need treatment may want to consider banking sperm first.

Girls' eggs are less sensitive to the destructive effects of powerful chemotherapy medicines. But that hasn't completely reassured Edith Yeargan of Atlanta, diagnosed at age 10 with acute lymphoblastic leukemia (ALL), the most common childhood cancer. "I have my worries. They say I can have children, but until you actually try, you just don't know," says Yeargan, 26, whose childhood experience led her to become a pediatric cancer nurse.

Other organs also can be affected. For example, some survivors of ALL show signs of heart damage from the chest irradiation and chemotherapy. "It's pivotal that these kids visit a physician regularly as they age, and keep records of the medications and procedures involved in their treatments," says Anna Meadows, director of the Cancer Survivorship Program at the Children's Hospital of Philadelphia. The same goes for kids treated for brain cancer. Researchers at several medical schools in the Netherlands found that children who have overcome the disease tend to be overweight and to have high blood pressure. Meadows speculates that radiation to the head may disrupt hormone production, which helps regulate weight and blood pressure.

Cranial radiation can also hamper brain development. Shaye Sauers, 21, a two-time brain cancer survivor, had high doses during her first bout, at the age of 5 months. She now uses a computer, writes fiction, and holds down a job as an office manager in her family's printing business in Atlanta, yet she has never roller-skated or bicycled, and has difficulty making change for a dollar. To minimize such damage, oncologists have dialed back head radiation doses, and many younger patients, especially those younger than 3, now get none at all.

Biting back. Probably the most disturbing question facing many survivors of childhood cancer is whether the toxic treatments will cause a new cancer. "You do go through your life thinking, when is it gonna come back and bite me in the butt?" says Barb Lee, 41, of Montclair, Va. In Lee's case it already has. At 15, she had a tumor in her left arm, and at 35 she developed breast cancer on her left side, probably linked to radiation she had received as a teen. A study reported in March showed that childhood-cancer survivors had a 2 percent chance of developing a second cancer by their late 20s, about three times the expected risk. And researchers in Finland found that over 20 years, Hodgkin's disease survivors treated with radiation had a 17 percent risk of developing second cancers in or near the areas that were irradiated.

The cancer risk is another reason for survivors to be vigilant, says Melissa Hudson, director of the After Completion of Therapy Clinic at St. Jude Children's Research Hospital in Memphis. "These young adults will have special needs as they age, but if they see a doctor regularly and stay on top of their health, they can lead healthy lives," says Hudson. They may even gain a fresh perspective from their brush with mortality. Mei says he has. "I put my heart into every day."