Caring for Pediatric Cancer Survivors Throughout Life

Thanks to great strides in pediatric oncology research, the rate of survivorship for children with cancer is rising. Fifty years ago, children with cancer rarely survived. Today, with various combinations of surgery, radiation and chemotherapy, nearly 70 percent of children diagnosed with cancer are now living long term (at least five years from diagnosis).

Robert Goldsby

An estimated one in 570 young adults between the ages of 20 and 34 is a survivor of childhood cancer. There are roughly 250,000 long-term survivors living in the United States today, with more than 30,000 in California. Although new therapies are enabling survivors to live longer, some therapies, such as radiation and chemotherapy, can cause severe side effects and increase the risk for later diseases unrelated to the initial cancer. So there is a strong need for long-term follow-up care. To address the needs of this growing population, UCSF Survivors of Childhood Cancer Program opened in March 2005. The program, which has clinical, research and educational components, is directed by pediatric oncologist Robert Goldsby, MD. "The successes in pediatric oncology are truly one of the triumphs of modern medicine," says Goldsby. "We are seeing more and more patients, so researchers and clinicians must keep abreast of potential long-term problems and develop programs to meet their needs." Long-Term Effects Researchers are studying the long-term effects of childhood cancer and its therapy. While life-threatening, late consequences of treatment are not the norm, researchers are finding that survivors face three times the average risk for a chronic health condition, and eight times the average risk for a severe or life-threatening disease. Examples of potential concerns are secondary cancers, fertility problems, psychological and emotional problems, learning difficulties, therapy-related organ dysfunction, and problems getting access to health care and insurance. Many survivors and their parents are not aware of these possibilities, says Goldsby. The goal of the clinical service is first to meet with patients and their families two years after cancer therapy has ended, and then to see patients every five years thereafter. Members of the Survivors Clinic include program coordinator and nurse practitioner Katie Maniatis, social worker Maria Bracamonte and clinical research associate Danny Hill. As part of this visit, a letter including the details of diagnosis and treatment is generated for the primary care physician. Passport to Health Patients also receive a Survivor Health Passport, a wallet-sized card that includes information on the patient's disease and treatment history, risk factors and follow-up recommendations based on Children's Oncology Group (COG) guidelines, to which Goldsby contributed. COG is a cooperative group of clinical researchers supported by the National Institutes of Health. The passport is carried by the patient and shared with other health care providers to ensure appropriate follow-up care. "We have had a number of survivors express tremendous gratitude for the passport, education and the clinic overall," says Goldsby. More specific benefits of the passport will be assessed in research conducted this year. In this study, researchers will test survivors' knowledge of diagnosis, treatment, risks and recommended follow-up, comparing those who had been issued a passport with those who had not. Currently, UCSF researchers are studying the aberrant signaling in cancer cells, gaining insight into the mechanism of cancer in order to develop more specific and less toxic therapies. Treatment regimens are starting to be tailored to individual patients in an attempt to reduce long-term adverse consequences. "The close interaction between scientists and clinicians at UCSF allows opportunities to bring discoveries in basic science research quickly to the bedside, speeding the process of developing new treatments," says Goldsby. "As we develop more biologically targeted therapies, hopefully, the cure rate will continue to improve." For more information, contact Dr. Goldsby at (415) 476-3831.