University of Minnesota
Physician Daniel Mulrooney listens to the lungs of leukemia survivor Rosie Peterson at the University of Minnesota's Long-Term Follow-Up Clinic. Lung function can sometimes be diminished by childhood cancer and its treatment.
Photo: Richard Anderson
Vigilantly ever after
U physicians protect childhood cancer survivors from adverse health effects later in life
By Mary Hoff
Jerrad Bergren will always remember Thanksgiving 1998. Diagnosed with acute lymphocytic leukemia in fourth grade, Bergren had been receiving chemotherapy and radiation at the University of Minnesota on and off for four years. He finished his last round the day after the big family celebration.
"It was a happy Thanksgiving," he recalls.
Though Bergren, now 23, officially completed his anticancer therapy 10 years ago, he will never be done with it. Treatment tough enough to kick cancer also roughs up healthy tissue, a fact Bergren must deal with for the rest of his life.
Fortunately, his doctors at the University will be there for him. Bergren sees his oncologist, Joseph Neglia, yearly. He is tested for signs of brain cancer and heart trouble, two possible side effects of his particular therapy. An endocrinologist helps keep his hormone levels on track, and he gains advice on minimizing future risks.
"Other than that, I'm pretty much a free person," he says. "I'm a pretty lucky guy."
Part of the contract
Forty years ago, few childhood cancer patients lived long enough to experience later-occurring side effects. But as treatment advanced, more survived and began experiencing disease- or treatment- related conditions ranging from learning disabilities to second malignancies.
As recognition of so-called late effects grew, so did the conviction that something could and should be done about them.
"I personally believe this is part of a contract that we implicitly enter into with children and families when we start their care," says Neglia, section chief of pediatric hematology-oncology.
In the early 1990s, Neglia and former U colleagues Leslie Robison, Ann Mertens, and Mark Nesbit received a pilot grant from the Children's Cancer Research Fund to test the feasibility of gathering health data from thousands of people who had survived childhood cancer. Armed with the findings, the researchers won and led a 26-institution National Institutes of Health study of more than 14,000 survivors of eight types of childhood cancer who had received treatment between 1970 and 1986.
Using powerful statistical tools, the Childhood Cancer Survivor Study (CCSS) has been exploring relationships among various types of cancers, treatment regimens, and health. Researchers have found that childhood cancer survivors may face elevated risks of second cancers, heart problems, abnormal growth, fertility issues, and a host of other complications. But the long-term health of some is similar to that of the general population.
Once the risks are known, survivors and their physicians can take steps to head off later health problems.
"The study led to the creation of a whole science around what follow-up is important for the patient, not only in terms of recurrence, but also for late outcomes," Neglia says.
Three years ago, University of Minnesota physicians established the Long-Term Follow-Up Clinic to monitor and manage the health of childhood cancer survivors. Those treated at the University are transferred to the clinic five years after diagnosis or three years after blood or marrow transplant. Individuals treated elsewhere are welcome, too.
"... The focus really is on long-term effects [patients] may ... experience," says clinic director Daniel Mulrooney. Together, the physician and patient review detailed treatment records and develop a plan for watching for complications.
Survivors like Shari VanPuyvelde know how important that is. Diagnosed with Ewing's sarcoma when she was 10, VanPuyvelde—now an oncology nurse—is managing the after-effects of treatment, including impaired lung and cardiovascular function. About three years ago, she graduated from the care of her pediatric oncologist to the clinic.
The Long-Term Follow-Up Clinic also informs primary-care physicians about the long-term risks of childhood cancer. A 2006 Institute of Medicine report noted that relatively few health-care professionals receive specific training in this area and recommended educating providers about treatment risks, the value of surveillance and intervention to minimize late effects, and the psychosocial and lifestyle implications for patients.
"General pediatricians, internists, and family doctors aren't yet aware of these issues," Mulrooney says.
After each clinic visit, Mulrooney provides copies of the patients' reports to the patients and their primary-care physicians. This, he says, helps doctors back home ensure that patients get needed attention--for example, early mammograms for women who received radiation therapy as girls.
The clinic also helps medical students and residents learn about the special needs of childhood cancer survivors.
Since the 1970s cancer treatment has changed dramatically, and so have the health implications. To help researchers learn more about correlations between treatments and outcomes, Long-Term Follow-Up Clinic patients are invited to participate in research and enroll in the clinic database.
Mulrooney, for example, uses such data to explore the effects of chemotherapy and radiation therapy on the cardiovascular system, in hopes of identifying who is at greatest risk. Associate professor of pediatrics K. Scott Baker studies the development of metabolic syndrome after blood and marrow transplantation.
A big challenge for CCSS has been obtaining data on patients treated years or decades earlier. To make it easier, the international Childhood Cancer Research Network, launched last December under the leadership of University pediatrics professor Julie Ross, streamlines data-gathering across a consortium of more than 200 cancer centers, covering up to 90 percent of childhood cancer survivors in the United States and Canada. It got a boost in July with passage of the Conquer Childhood Cancer Act, which earmarks $5 million for the registry over the next five years.
A new Masonic Cancer Center research program, co-directed by Baker and Beth Virnig, associate professor in the School of Public Health, brings researchers together to devise better ways of preventing and improving outcomes from late effects. The cross-talk is particularly valuable for survivors of childhood cancer as they become adults.
"We're all in this together," Virnig says. "Some of the best insights happen when you get people talking."
Edited from Medical Bulletin, fall 2008, a publication by the Minnesota Medical Foundation