With her bright eyes and peaches-and-cream complexion, Ashley Dado is a picture of youthful health. You’d wonder why this 22-year-old college senior needs regular mammograms and heart scans.
To understand, you have to go back to when she was 10 years old, the summer before fifth grade. The avid softball player was having a hard time holding down food that July, vomiting so often that she eventually lost 20 pounds. It wasn’t a stomach virus, as doctors first thought. It was a tumor pressing on the back of her brain.
After surgery and nearly a year of chemotherapy and radiation treatments, Dado, of Overland Park, has spent the last decade cancer-free.
The United States has an estimated 363,000 childhood cancer survivors like Dado. Their numbers have been increasing steadily as advances in treatment have drastically improved their odds.
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It’s a medical success story, but with that success has come a growing recognition that these children often must struggle with “late effects” of their treatments that may not appear until decades after they are grown. They face increased risks of heart and lung disease, problems conceiving children, difficulty remembering or solving problems and the possibility of new cancers.
Cancer specialists say they should be receiving lifelong medical monitoring geared to these risks, but most don’t.
Consider Dado one of the lucky ones. She was one of the first patients to enroll in a new program at the University of Kansas Cancer Center for adult survivors of childhood cancers.
Opened in July, the Survivorship Transition Clinic already has 28 patients. It is one of just a half-dozen such adult care clinics in the U.S. The clinic schedules the follow-up screenings these cancer survivors need and arranges their care from KU Medical Center’s specialists.
“It’s reassuring,” Dado said. “They have everything you would need, all the doctors.”
Dado’s good health is a testament to the vast improvements in treating cancer in children over the last half-century. In the 1970s, the combined five-year survival rate for all childhood cancers was about 62 percent. Now, it is about 81 percent, far better than the 68 percent survival rate among adults.
“In the ’70s and ’80s we saw enormous increases in survival of childhood leukemia,” the most common childhood cancer, said Lisa Diller, the chief medical officer of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and the medical director of its program for survivors of childhood cancer.
“We learned how to use many of the new cancer drugs that are regularly used today. In the ’90s and 2000s, we’ve learned about the genetics of tumors and how to determine which children are at high or low risk from aggressive therapy.”
It didn’t take long for cancer specialists of a generation ago to realize that therapies that were safe for adults could harm children’s growing bodies, Diller said. For example, at certain levels, radiation could stop young bones from growing. “It became obvious pretty quickly that we were seeing side effects,” she said.
It has only been in more recent years, as early childhood cancer survivors have been maturing into middle age, that doctors realized the full extent of the late effects of cancer treatment.
Radiation and chemotherapy drugs can damage hearts and lungs, leading to future health problems. They can damage ovaries and testes, leading to fertility problems, as well as glands of the endocrine system, affecting growth during adolescence. Radiation to a girl’s chest may increase her risk of breast cancer. Certain chemotherapy drugs can cause hearing loss.
St. Jude Children’s Research Hospital has been following a group of childhood cancer survivors who were diagnosed with cancer an average of about 25 years ago. In a study published last year, the researchers found that virtually all the cancer survivors — 98 percent — had at least one chronic health problem. And by age 45, about 80 percent had at least one life-threatening, serious or disabling condition.
Just as troubling was another St. Jude finding: Just 31.5 percent of adult survivors were getting medical care that focused on their childhood cancers.
“I do fear there may be many survivors out there who aren’t getting appropriate care,” Diller said. “They grow up, move away, get married. They may not know about their treatment when they were 2 years old, and their parents may be gone.”
Wendy McClellan has encountered patients like these. McClellan is the nurse coordinator of the Survive and Thrive program at Children’s Mercy Hospital for young patients a few years past their cancer treatments.
“We’d get calls from adult survivors asking where to go. They’d come out of the woodwork. They wanted to be seen by someone who understood their condition,” McClellan said.
Survive and Thrive works with teenage patients and the parents of very young children, explaining the risks of late effects and offering advice for how to stay healthy and how to advocate for the children’s medical care once they become adults.
But Children’s Mercy doesn’t take adult patients. All McClellan could do for the adult survivors who called was encourage them to get a detailed summary of their cancer care from their hospitals so their doctors would understand what they needed.
With the possibility of an adult survivors program in mind, McClellan and researchers at Children’s Mercy and KU in 2010 surveyed their former childhood cancer patients who were in their late teens and twenties. Most of those young adults said they were in good health, but they wanted more information about the late effects of their treatments.
“What stood out the most was they didn’t feel understood by their health care provider,” McClellan said. “The providers wouldn’t link their symptoms to their early treatment, when the patients thought they were (linked). They wouldn’t know what to do with those symptoms.”
More than 80 percent of adult survivors of childhood cancer are seen by internal medicine specialists and other primary care doctors in their communities, but, on average, internists felt “somewhat uncomfortable” caring for these patients, a recent national survey found. When given a hypothetical case of a female patient who received radiation and chemotherapy as a child, the vast majority of these doctors failed to recommend mammograms every year or echocardiograms every other year, as called for in treatment guidelines for these cancer survivors.
“That probably is common. The awareness of late effects is still developing,” said Becky Lowry, the medical director of the new KU survivorship clinic.
Lowry recalls seeing a patient in her 50s who had leukemia when she was in high school. She was growing progressively short of breath and her heart was pumping less forcefully. The woman’s doctors never made the link between her medical problems and her cancer treatment, she said. At KU Hospital, the woman was sent to a cardiologist who specializes in cancer patients. She needs regular echocardiograms to monitor her heart.
“I think a big part of what we do is prevention,” Lowry said. “It’s knowing what to watch for to catch problems early.”
A patient generally comes to the clinic once a year. A nurse practitioner walks the patient through the treatment he or she received as a child and discusses the risks the patient faces and what screenings he or she will need.
The program draws upon psychologists and social workers to help patients with the emotional issues that can arise from late effects of their cancer treatments. It also can make referrals to fertility experts.
“A program like this works best at a large academic medical center,” Lowry said. “We have the luxury of having a lot of the specialists here.”
Getting health plans to pay for mammograms for 25-year-old women or echocardiograms for patients who don’t have chest pains is another part of the program.
“We do have conversations with insurance companies, educating them about the guidelines” for cancer survivors, Lowry said.
Dado remembers her cancer treatment as a scary time in her life. “I had never heard of that cancer before. I thought I was going to die.”
At the base of her brain, surgeons found a tumor the size of a large strawberry that had started growing into her spinal column. They were able to remove most of it, but not the part that had reached her spine. That required chemotherapy and radiation of her entire spinal column. Those therapies now put her at greater risk of breast cancer and heart problems.
Dado also has some trouble with eye-hand coordination and concentration, late effects of her treatment. But that hasn’t slowed her education. She plans to graduate this spring from MidAmerica Nazarene University with a degree in health and exercise science. Her goal is to become a health educator helping children who are undergoing cancer treatment.
“I would have liked to have someone like that when I was a kid, someone who’s gone through it who can explain the process,” she said.