Helping Young Survivors Manage Risks from Treatment

In the 1960s, the population of childhood cancer survivors might have rivaled that of Death Valley - a diagnosis was nearly a death sentence. Today, an estimated 270,000 people are long-term survivors of childhood cancer. That's a number larger than the population of Bakersfield, Riverside or Stockton, California. More than 70 percent of children diagnosed with cancer now are being cured. Better treatment is largely responsible. But there's a downside to the lifesaving treatment. Researchers and clinicians now know that chemotherapy and radiation treatments that save lives increase risks for later diseases unrelated to the initial cancer. While life-threatening late consequences of treatment are by no means the norm, survivors of childhood cancer may nonetheless face three times the average risk for a chronic health condition, and eight times the average risk for a severe or life-threatening disease. Robert Goldsby, a pediatric oncologist at UCSF, notes that many childhood cancer patients and their parents may be uninformed about these long-term risks.

Aimee Sznewajs and Robert Goldsby

Goldsby participated in a Children's Oncology Group (COG) task force that drafted long-term follow-up guidelines for childhood cancer survivors. COG is a cooperative group of clinical researchers supported by the National Institutes of Health. To help patients, parents and primary care physicians become aware of risks, to minimize risks, and to identify treatment-associated health problems early, Goldsby leads the Survivors of Childhood Cancer Program at UCSF. The program is largely a clinical service, but it also includes a research component. Clinical Service "A lot of survivors will do fine and have no subsequent treatment-related health issues," Goldsby says. "But others will experience significant health problems." The likelihood of having significant problems is affected by the type of cancer and the type of treatment. "We emphasize the celebration of being a survivor," Goldsby says. "We don't want cancer survivors leaving the clinic thinking, 'Oh, my gosh, I've got all these problems.'" Members of the clinical service include clinic coordinator and nurse practitioner Aimee Sznewajs, social workers Anne Pearl and Maria Bracamonte, and clinical research associates Shannon Bowes and Danny Hill. Although program members already consult with experts in endocrinology, cardiology and pulmonary medicine, they aim to better meet the unique needs of survivors by expanding to provide even more specialized clinics in conjunction with these experts. The goal of the clinical service is to first meet with patients and their families two years after cancer therapy has ended, and to see patients every five years thereafter. During a recent, typical day, clinic staff saw survivors ranging in age from 10 to 46.

Wallet card reminds childhood cancer survivors of medical care facts and issues.

Goldsby and his staff provide a complete record of diagnosis and treatment, including type, dosages and timing of treatment. Clinicians and families review patient records, and discuss long-term health issues and follow-up recommendations for medical care. This same information is sent to the patient's primary care physician in a letter. Patients are provided with a personalized wallet card as a ready reference. Each card lists the cancer treatment received on one side and medical recommendations on the other. If, over time, medical research points to additional risks for past treatments, the cancer survivor or physician will be able to reference the patient's information to determine whether newly identified risks might affect that patient. New Results from Ongoing Research Goldsby and Arthur Ablin, a UCSF clinical professor emeritus and adviser to the Survivors of Childhood Cancer Program, have been leading UCSF participation in the ongoing Childhood Cancer Survivor Study. The researchers are identifying and gauging treatment- and cancer-specific disease risks among childhood cancer survivors. A total of 27 US and Canadian medical centers are involved. Major findings from the first phase of the study were published in the New England Journal of Medicine this past October. Researchers compiled data and periodically interviewed more than 10,000 survivors of childhood cancer diagnosed between 1970 and 1986. Compared with a matched population of siblings that had never had childhood cancer, survivors had higher rates of heart disease, lung damage, second cancers, learning disorders, infertility and other health problems. The oldest participants in the first stage of the study now are in their 40s. Unfortunately, so far, it does not appear that the risks posed by childhood treatment plateau with age, even decades later, Goldsby notes. Another group of childhood cancer survivors has been added to the study population. These participants were diagnosed later - between 1986 and 2000. "In many situations, treatment has become more intensive," Goldsby says. "It has been an ongoing challenge for oncologists to determine who might need more intense therapy and who might need less. Survivorship is a moving target. As our treatments change, the consequences of treatment may change." Ideally, newer and better targeted treatments will provide more cures and still pose less risk of harmful consequences later. (This story first appeared in the Winter 2007 issue of the UCSF Comprehensive Cancer Center Report.) Photos/Elisabeth Fall

 

Related Links

Chronic Health Conditions in Adult Survivors of Childhood Cancer

New England Journal of Medicine, October 12, 2006

Health “Passport” Helps Childhood Cancer Survivors Manage Their Care

UCSF News Release, June 5, 2006

Long-term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

CureSearch, Children’s Oncology Group

UCSF Comprehensive Cancer Center