Therapeutic advances in treating childhood malignancies such as leukemia, lymphoma, and central nervous system tumors have improved survival rates.1, 2 During 2006-2012, the 5-year survival rate was about 83% for children and adolescent cancer patients, although rates vary by cancer type and age at diagnosis.1 In the United States, about 1 of 530 young adults between the age of 20 and 39 years is a childhood cancer survivor, and estimates suggest survivors will exceed 500,000 by 2020.2 Although chemotherapy, radiation, and hematopoietic cell transplantation have improved survival, they are not without potential later health effects. Estimates suggest that about 67% of pediatric cancer survivors will have long-term complications, and 33% will have severe, life-threatening, or chronic conditions. These include subsequent cancers (at a different site), cardiovascular disease, diabetes, cognitive problems, and depression.3, 4
A study of neoplasm risks among 23,603 young cancer survivors from 1970 through 2015 in the United States and Canada revealed that the most common initial diagnoses of those experiencing subsequent cancers were acute lymphoblastic leukemia, Hodgkin lymphoma, and astrocytoma and that risk of subsequent malignancies 15 years after initial cancer diagnosis remained elevated but decreased each decade through the 1990s.5 This finding was associated with reduced therapeutic radiation dosage.5 Pediatric cancer survivors are also at risk for kidney disorders, lung disease, and cardiovascular conditions.
Long-term cancer risk may also be attributed partly to therapy administered to those who have a predisposing genetic mutation. Whole genomic sequencing of 1,120 childhood and adolescent cancer patients revealed that about 8.5% (95 of 1,120) had germline mutations in cancer-predisposing genes. In contrast, the rate was about 1.1% of persons in the 1000 Genomes Project and 0.6% of participants in an autism study.6
Once treated, childhood cancer survivors can lose touch with their providers and be unaware of future health needs. A multidisciplinary team approach is critical to transitioning from pediatric to adult–centered care that addresses long-term health risks across the entire life span. With this approach, programs can more effectively educate the patient about future risks, suggest and implement appropriate screening for potential health problems associated with previous therapy, and detect and mitigate survivor-associated psychosocial problems. An analysis of 29 providers at 3 large cancer centers suggested that the optimal model of care should also be structured around aiding communications among key stakeholders and emphasizing patient-friendly services that minimize stress to patients.3, 4
The University of Minnesota Health Childhood Cancer Survivor Program offers a multidisciplinary, coordinated care approach for these patients, tailoring screenings and care to patients and coordinating treatment histories and referrals. At age 20 to 25 years, pediatric cancer survivors are transferred from a pediatric clinic to an adult clinic where the University of Minnesota Health Childhood Cancer Survivor Program continues survivor focused care. The annual Cancer Survivorship Conference offers patients opportunities to gather the latest health information and network with fellow survivors. University of Minnesota Health physicians and researchers have also initiated clinical trials to study the long-term health risks of immunotherapies and targeted agents.
All cancer and blood and marrow transplant survivors—children and adults—require follow-up care regardless of the amount of time since they last had treatment. Depending on the cancer type and therapy received, cancer survivors may be at risk of developing late effects, such as second cancers, cardiopulmonary problems, bone disorders, and infertility.
The University of Minnesota Health Childhood Cancer Survivor Program offers healthcare to survivors of childhood and young adult cancers and bone marrow transplants, in cooperation with patients’ primary care physicians and regardless of where patients’ cancers were treated. Childhood cancer survivor specialists work with patients to identify and manage the long-term effects of cancer (termed late-effects) and its treatments. Services include
Our team includes a physician, nurse practitioner, and a social worker who can assist patients in getting the survivor-focused healthcare they require. We provide patient education about possible long-term effects of cancer therapy or of bone marrow transplantation and what screenings are needed to maintain a healthy, active life.
The Childhood Cancer Survivor Program is open to all childhood and young adult cancer survivors without regard to current age, diagnosis, or place of treatment. Childhood survivors are eligible 5 years after diagnosis or 3 years after blood and marrow transplantation. As patients mature, the Childhood Cancer Survivor Program continues to provide care in an age-appropriate setting, such as the adult services Masonic Cancer Clinic. The University of Minnesota Cancer Survivor Program hosts an annual Survivorship Conference that allows survivors to get updates on cancer treatment and interact with a community of survivors.
To find current clinical trials available through M Health providers: studyfinder.umn.edu.
A childhood cancer survivor finds herself facing later health effects, including a heart valve condition and carcinomas. Long-term follow-up care helps her address care needs and maintain her health.Continue reading