For a school assignment when he was 11, Michael Schiller wrote a 15-page autobiography. He devoted one page to his “changing point” at age 6.
“I had an interesting experience that would stay with me for the rest of my life. It all started when I began getting headaches. I, Michael Schiller, had a gangleogleoma,” he wrote, misspelling ganglioglioma. “This probably means nothing to you, but to clear everything up, I had a form of brain cancer.”
That sixth-grader grew up to be an accomplished jazz pianist, cancer activist and a beloved social worker at Children’s Hospital of Philadelphia, where he was treated. His story illustrates why a whole field of medicine has evolved to help childhood cancer survivors with the lifelong aftereffects of treatment.
But his story also shows the burden and challenges of being vigilant for the cruelest consequence — another cancer. The head radiation that saved him as a child also damaged healthy cells, likely seeding the sinus tumor that spread and ended his life in September at age 36.
“When he turned 21, I said, ‘You’ve got to be responsible for your health’ — and he was,” said his mother, Maryanne Schiller. “But after 28 years, you kind of think you’re doing OK. We all stopped being so mindful and watchful.”
Today, 85% of children diagnosed with cancer survive at least five years, and most are cured.
“Kids’ cancer is a big success story,” said Dr. Tara Henderson, an oncologist and survivorship researcher at the University of Chicago’s Comer Children’s Hospital.
Treatment has become less toxic, primarily because radiation is used more sparingly. Dramatic evidence comes from the Childhood Cancer Survivor Study, which has followed almost 24,000 survivors in North America: Radiation use plummeted from 77% of children treated in the 1970s to 33% treated in the 1990s, while the incidence of secondary cancers fell from 2.9% to 1.5%.
“And we’ve continued to reduce radiation therapy,” said Dr. Lucie Turcotte, an oncologist at the University of Minnesota’s Masonic Children’s Hospital, who led that analysis. “What we don’t fully understand is the late effects of newer chemotherapies, targeted therapies, and immunotherapies. That’s going to be the next chapter in the story.”
Schiller, diagnosed in 1989, posed a dilemma for doctors. His rare brain tumor, centered on his optic chiasm, had many tentacles, so it couldn’t be surgically removed. Existing chemotherapies would not penetrate his brain’s protective barrier of blood vessels.
“He had to have massive cranial radiation. They didn’t have protons back then,” his mother said, referring to proton beam therapy, which reduces damage to healthy tissue.
He was subjected to stares and worse when he started first grade with a big scar on his half-shaved head, impaired vision and steroid-induced bloating.
“I had challenges to deal with the criticism,” he wrote in his autobiography, dedicated to his parents and big sister, Brana. “I was different from the old me and the rest of the students!”
Gaps and pitfalls
About one in every 600 young adults in the U.S. — 270,000 people ages 20 to 39 — is a cancer survivor, based on federal data. For most, the transition from pediatric to adult care is full of gaps and pitfalls.
To be sure, the situation is better than when such children rarely survived to adulthood. Now, expert guidelines for follow-up care, and clinics devoted to coordinating that care, help young adults anticipate and manage the myriad challenges, such as infertility, premature menopause, heart and lung damage, hearing loss, genetic counseling and medical debt.
Many patients just want to put cancer behind them. Gabrielle Millman, 32, of Lower Merion, Pa., remembers little of her treatment for leukemia as a toddler, but she vividly remembers conflict with her mother over ongoing care.
“I didn’t want to go to doctors’ appointments. I wanted to be normal,” Millman said. “My coping mechanism was: It didn’t happen to me. It happened to a 2-year-old.”
It seems intuitive that childhood cancer would leave gaping psychological wounds. But research finds that isn’t necessarily so. The Childhood Cancer Survivor Study, for example, surveyed 1,100 adults who beat pediatric brain cancer, as well as their 2,800 siblings, and concluded that “cancer does not appear to contribute directly to increased psychological distress.”
Schiller maintained his equanimity even when his father was diagnosed in 2000 with an aggressive brain cancer.
His dad “did say to Michael at one point, ‘I’m so sorry you have to go through this,’ ” his mother recalled. “Michael said, ‘Dad, you’re the only one in my life who really understands what I’ve been through. It makes us even closer.’ ”