Through clinical trials and a revolutionary genome project, St. Jude clinicians and researchers unveil the secrets of childhood melanoma.
The young girl’s fair skin, freckles and luxuriant red hair originated with her Dutch ancestry. The boy’s darker complexion is the result of his Filipino and African-American heritage. But 10-year-old Alyssa de Jong and 9-year-old Asa Boomer-Brazier share a disease more frequently associated with Caucasian adults: a malignant skin cancer called melanoma.
Both Alyssa and Asa owe their lives to parental vigilance and the superb medical care they have received at St. Jude Children’s Research Hospital.
Melanoma occurs so rarely in young children that pediatricians may miss it during routine checkups.
“When a mole appeared on Asa’s shin in the fall of 2012, his pediatrician sort of dismissed it,” says his mom.
By the time a definitive diagnosis occurred, the little boy had an advanced form of pediatric melanoma, which can be life threatening. His mom, university biostatistician KB Boomer, immediately began researching the subject. “I read every scientific article I could find on pediatric melanoma,” she recalls.
KB quickly realized how unusual it is for young children to have the disease. Although skin cancer is the most common form of cancer in the U.S., fewer than 70 cases of melanoma occur annually in individuals under age 10. And only 10 to 15 percent of those children have an advanced form of the disease, which means it has spread to the lymph nodes or other parts of the body.
When Alyssa’s mom learned that the red bump on her daughter’s arm was melanoma, she was shocked. “That can’t be!” Angela told the dermatologist. “You told me that doesn’t happen in kids under 13!”
But it does.
“A lot of pediatricians and family doctors simply don’t think about melanoma occurring in children,” says Fariba Navid, MD, of St. Jude Oncology. “After all, kids haven’t had the years of sun exposure that adults have had.”
According to the National Cancer Institute, nearly 76,700 people will be diagnosed with melanoma in 2013. Although the number of children with the disease is small, the incidence rises dramatically with age and cumulative exposure to ultraviolet rays.
“The incidence of adult melanoma is skyrocketing,” Navid says. “And it turns out that in the adolescent population, it’s also on the rise. In the 15- to 19-year-old age group, it’s three times more common than it was 10 years ago. We think the incidence is increasing in teenagers partly because so many of them are going to tanning booths.”
In 2009, the International Agency for Research on Cancer determined that indoor tanning devices are as likely to cause cancer as cigarettes and asbestos—with melanoma risk increasing 75 percent in people who begin using tanning beds before age 30. Navid and her colleagues are doing their part to encourage patients and families to reduce their exposure to UV radiation, whether from sunlight or indoor tanning devices.
Melanoma on trial
Learn about St. Jude clinical trials for melanoma.
Sifting the genome for clues
Learn how scientists are using next-generation whole genome sequencing to understand melanoma.
Spreading the word
When Navid and Pappo offer advice about sun safety, some patients—like Asa, Alyssa and Trevor—take those lessons to heart. They dutifully cover their skin with sunscreen, long sleeves and hats and try to avoid going outdoors when the sun’s rays are strongest.
“I’ve always been the mother who put sunscreen on my child,” observes Asa’s mom. “People would say, ‘Why are you putting sunscreen on a black kid?’ and I’d say, ‘Because everyone can get sun damage.’
“It’s important to get the word out,” she continues. “People need to know that kids can get melanoma.”
Alyssa enlists her family, friends and classmates to help her remember to wear her hat and sunscreen and keep her arms and legs covered. She wears sunscreen head to toe—even underneath her clothing and on cloudy days. She knows it’s a habit she must follow for the rest of her life, rain or shine.
“People don’t take melanoma as seriously as they need to—especially in kids,” says Alyssa’s mom. “That scares me. What if? What if we hadn’t taken Alyssa to the doctor? What if I hadn’t said, ‘Look at this!’ What if, when the doctor dismissed my concerns, I had not said, ‘This is not right’? What if we hadn’t come to St. Jude?”
Thanks to her experience, Angela has become a vocal proponent of sun safety and of the importance of continuing melanoma research. She and Alyssa recently traveled to Washington, D.C., to represent St. Jude at the Children’s Hospital Association’s Family Advocacy Day. There, Angela shared Alyssa’s story with lawmakers on Capitol Hill.
“I want to give back,” Angela says, “because this place saved my child’s life.”
Abridged from Promise, Summer 2013