On June 4, the President's Cancer Panel issued Living Beyond Cancer: Finding a New Balance, an examination of effects of cancer treatment over a life span and among separate age groups. The advisory group's report is based on a recently completed year-long series of meetings with nearly 200 cancer survivors, their caregivers, health care providers, and insurers.
With dramatic improvements in detection and treatment, there are now almost 10 million American cancer survivors, a jump from 3 million in 1971. "Now we're recognizing that their challenges often continue long after their treatment concludes," said panel chair Dr. LaSalle D. Leffall, Jr., Charles R. Drew Professor of Surgery at Howard University College of Medicine and chairman of the board of the Susan G. Komen Breast Cancer Foundation.
Survivors reported infertility or pregnancy complications, premature aging and heart disease, and late-appearing psychosocial effects, including depression and anxiety. They also reported not receiving adequate documentation from their physicians when treatment ends and lack of a thorough, follow-up health plan that covers future check-ups, possible long-term effects, and information on recurrence. And while patients may regard their cancer as beaten, insurance companies and employers may work from different sets of rules that are not always understandable or consistent.
The panel, consisting of Dr. Leffall, five-time Tour de France winner and cancer survivor Lance Armstrong, and Dr. Margaret L. Kripke, executive vice president and chief academic officer of the University of Texas M.D. Anderson Cancer Center, noted that the age at diagnosis and treatment creates specific needs and issues. Children diagnosed before age 15, for example, may need help becoming reacclimated to the classroom environment.
Adolescents or young adults might experience psychosocial problems such as depression and limited social skills. Transitioning from pediatric to adult medical care is particularly difficult. Meanwhile, survivors aged 60 and older may face job loss or forced retirement and reduced benefits.
The panel recommended that all survivors be given a complete record of their diagnosis and treatment, as well as a plan for follow-up health care that includes a schedule of screenings and examinations for known late effects of therapy. In addition, the panel endorsed the need for an electronic medical record (EMR) and called upon the U.S. Department of Health and Human Services to ensure that the concerns of cancer survivors are addressed in planning for the implementation of EMRs.
The NCI Office of Cancer Survivorship (OCS) already is working to address some of the issues highlighted in the report. Specifically, OCS is supporting efforts on the part of the oncology community to develop a standardized treatment summary form and follow-up care guidelines. A number of related research initiatives will improve our understanding of how cancer affects family members and caregivers across the life span and whether interventions to help family members cope improve the cancer survivor's health; what information needs to be shared between survivors and health care professionals and the role of new media and technology in the distribution of that information; and how sociocultural variables affect quality of life and other aspects of survivorship.