(October 2011) Until about 40 years ago, cancer was a death sentence for most children. Today, about 80 percent of children diagnosed with cancer will be alive five years later, and some will live for decades.
But there’s a catch. They have survived only to face what are called late effects: stroke, heart problems, infertility issues, secondary cancers and more. The National Cancer Institute estimates there are 270,000 survivors of childhood cancer alive in the United States.
“Survivors of childhood cancer have unique health care needs,” says Kerry Moss, MD, a pediatric oncologist now in Connecticut who helped create the University of Colorado Cancer Center’s clinic for survivors of childhood cancers. “Many people who had cancer as a child don’t remember it, or if they do, may not consider it important to their health today. After all, they survived, right? Or, they may simply not know where to turn for follow-up care.”
In the spring of 2007, Moss was looking for a project to finish her pediatric oncology fellowship at CU. She had been working in the Children’s Hospital Colorado HOPE Clinic for young adult survivors of pediatric cancers, one of the oldest cancer survivorship clinics in the nation.
There she noticed that a lot of people were coming in who were in their 30s and 40s, and there even was a 60-year-old. “The HOPE Clinic is staffed by people who know about the late effects of pediatric cancer treatment, but no one who is an expert in a 50-year-old’s heart problems,” Moss says. “Our network usually extends to other pediatric specialists who also don’t have expertise in adult medicine.”
She and her mentor, Brian Greffe,MD, a pediatrics professor of hematology and oncology, saw a need for something different. Moss put out a call for internists and others at the university who were interested in adult survivors of childhood cancers.
Responding were Dr. Alison Jones, director of the CU Cancer Center’s LIVESTRONG Cancer Survivorship Center of Excellence, and Linda Overholser, MD, assistant professor of internal medicine with the CU medical school and an internist at University of Colorado Hospital. Greffe and CU Denver’s section head of internal medicine, Jean Kutner, MD, joined the team to cement the vision of a clinic for adult survivors of pediatric cancers. The result is a collaboration between the cancer center, a children’s hospital and an adult hospital, called the Thriving After Cancer Treatment is Complete, or TACTIC, clinic.
The planning team decided that patients would see one of two pediatric oncologists, an internist, a cancer psychologist and a nurse educator. If they needed help with nutrition or community resources, those experts were on hand at the Cancer Center. The team sees up to four patients each month.
TACTIC is unusual in that it’s set in an adult care primary-care environment rather than a pediatric oncology clinic.
“That’s because we are dealing with adults here—adults who had cancer as children, but adults nonetheless,” Overholser says. Many patients don’t know what effects specific childhood treatments may have on them, according to Overholser.
“For example,” she says, “girls who are ptreated with chest radiation for Hodgkin’s lymphoma have a much higher risk of breast cancer and may need to start having mammograms at age 25, depending on when they finished treatment, and they might also want to consider having children earlier because of a risk of early menopause related to having received chemotherapy.”
Kristin Kilbourn, PhD, a health psychologist, finds that pediatric oncology survivors often report traumatic memories associated with their cancer treatment:
“Often they’re feeling guilty about the burden they placed on their family, the sacrifices made by their parents, as well as the lack of attention that their siblings received when they were sick. Sometimes you see survivor guilt, especially if they were treated in settings where they knew other children who didn’t make it.”