In 1999, an estimated 8.4 million people are living with a history of cancer. These individuals were diagnosed as children or adults with different kinds of cancer. Yet there have been few follow-up studies of long-term survivors that look at the characteristics of these individuals to uncover factors that might enhance survival for all cancer patients.

Acknowledging the need for more information on the demographics of cancer survivors, their current health, and their unique needs, NCI established the Office of Cancer Survivorship (OCS) in 1996. In 1999, the office's budget and operating capacity were tripled. The office supports research on survivors; educates clinicians, health care providers, and survivors themselves about the needs of cancer survivors; and works closely with the cancer advocacy community.

"This office is about living. For most people, cancer isn't the death sentence it used to be. The studies that have been done looking at survivors' quality of life suggest that the majority of those individuals are doing well following their illness," said OCS Director Julia Rowland, Ph.D. "But more information is needed to truly understand who is surviving, why some people live longer than others, and what their quality of life is like."

Background

Cancer is not the dread disease that it was years ago. Improvements in cancer prevention, early detection and treatment as a result of research funded since passage of the National Cancer Act in 1971 has resulted in lengthening survival.

During the 1990s, cancer incidence has been leveling out while mortality has been decreasing. Surveillance research funded by NCI's Surveillance, Epidemiology, and End Results Program (SEER) shows that between 1990 and 1996, the number of all new cancer cases combined declined on average 0.9 percent per year, while the number of deaths declined on average 0.6 percent per year.

At the same time, cancer survival is being prolonged. The majority of cancer patients will be cured of or will live long periods of time following their diagnosis, according to SEER estimates. The five-year relative survival rate for all cancers combined improved from 49.7 percent in 1975 to 51 percent in the early 1980s to 60 percent in the 1990s.

Additional data from the Centers for Disease Control and Prevention's National Center for Health Statistics' 1992 National Health Interview Survey (NHIS) show that almost 10 percent of the cancer survivors interviewed were alive more than 25 years after their initial diagnosis. It is hoped that more qualitative information about survivors can be gleaned from a cancer control supplement to the Year 2000 NHIS, which will collect important data on survivorship, family history, genetic testing, quality of life, physical activity, dietary practices, and tobacco use.

Patterns of cancer survival by diagnosis are also changing. It has been estimated from data in the 1992 NHIS that gynecologic cancer survivors constitute the largest proportion of the survivorship population. SEER data show breast cancer survivors are the largest group, followed by prostate cancer survivors.

Cancer takes an economic and emotional toll on survivors and their families. For example, the 1992 NHIS data showed that 18 percent of survivors interviewed reported employment problems because of their cancer, while about 11 percent said they had been denied health or life insurance coverage.

Focus of Research

OCS currently supports 42 research grants addressing the physical, psychological, social, economic, surveillance, and epidemiological aspects of cancer and its treatment.

Priority research for the future focuses on interventions to prevent or diminish subsequent adverse physical or psychosocial effects, such as sexual problems and development of second cancers. Such studies may also measure the effect of specific behavioral or medical interventions on subsequent health outcomes or health practices, including education strategies, health related beliefs and behaviors, and lifestyle influences.

Other key areas include supporting the development of quality-of-life measures for use with long-term cancer survivors; evaluation of cancer's impact on the family from diagnosis through treatment and survivorship; training and education of patients and professionals about cancer survivors' needs and follow up; analysis of economic outcomes; and examination of the impact on cancer survivors of genetic testing.

Survivorship studies under way are gathering evidence on pivotal areas affecting the health and quality of life of cancer survivors, particularly among those diagnosed more than five years ago, and will attempt to fill some of the current gaps in knowledge. Examples of new projects funded in 1999 are:

• Long-term Impact of Surviving Breast Cancer: (University of South Florida, Tampa, Fla., Thomas N. Chirikos, principal investigator, $150,000 over two years.) The ultimate aim of this research is to ascertain whether cancer exacts a long-term or continuing economic toll from survivors and their families. In order to facilitate the design of cost minimizing interventions, key factors that either raise or lower that toll will be identified.

• Managing Uncertainty in Older (Over age 65) Breast Cancer Survivors: (University of North Carolina, Chapel Hill, N.C., Merle Mishel, Ph.D., principal investigator, $2 million over five years.) An estimated 97 percent of women with localized breast cancer and 77 percent with regional disease are expected to be alive five years after diagnosis. Many in the understudied population of those over age 65 will experience uncertainty about a cancer recurrence and secondary cancers. This study will test an intervention designed to help women manage long-term treatment-related side effects such as arm swelling, cosmetic changes, and fatigue.

• Learning Impairments among Survivors of Childhood Cancer: (St. Jude Children's Research Hospital, Memphis, Tenn., Raymond K. Mulhern, Ph.D., principal investigator, $2 million over five years.) Children surviving some types of cancer, particularly leukemia and brain tumors, have an increased incidence of learning impairments compared to their healthy peers in the general population. These impairments, for which there is no known effective treatment, inhibit normal academic achievement, vocational attainment, and quality of life. This study will test the validity of a model in which treatment-induced lesions of the brain, especially the white matter, are examined as an underlying cause of learning difficulties.

• Testicular Cancer Survivors' Adjustment and Health Behavior: (M.D. Anderson Cancer Center, Houston, Texas, Karen M. Basen-Engquist, Ph.D., principal investigator, $151,000 over two years.) This cancer represents only about 1 percent of all male cancers, but it is the most common cancer in men between ages 15 and 44. Because of the young age at diagnosis and very high success rate in testicular cancer treatment, survivorship issues become tremendously important. This study will compare quality of life and health behaviors, such as diet and exercise, of the survivors to a member of their family of similar age who will act as research controls. It will assess quality of life, mental health, sexual functioning and relationship satisfaction, and their association with better adjustment to help tailor interventions to reduce the stress of this disease.

• Economic Consequences of Cancer Survivorship: (Pennsylvania State University, University Park, Pa., Pamela F. Short, Ph.D., principal investigator, $2 million over five years.) This study is designed to answer the following research questions: what changes in employment, earnings, and health insurance do cancer patients experience shortly after diagnosis and treatment; what is the effect of cancer survival on trajectories of employment, earnings, and health insurance over the long-term; how do economic effects of cancer vary by type of cancer, patient characteristics, pre-diagnosis employment and insurance; what adjustments in the employment and health insurance of spouses are made as a consequence of the diagnosis; and what are the implications of the economic consequences for the pyschosocial well-being and quality of life of cancer survivors.

  Support Links

  Underscoring its commitment to the growing population of cancer survivors, OCS launched a newly designed Web site in late 1999. The site can be reached at NCI's Division of Cancer Control and Population Sciences' homepage: http://dccps.nci.nih.gov by clicking on the "Survivorship Research" button.

  Researchers, clinicians, and survivors and their families are able to communicate directly with NCI staff through the Web site. Consumers will also learn how to become involved in the research direction and oversight process. In addition, the user-friendly site has a resource list of programs for survivors that will expand over the next year, and includes links to related articles, data, and press releases.

  OCS sponsored workshops in 1998 and 1999, bringing together experts on the medical and psychosocial aspects of cancer survivorship to help educate researchers, clinicians, and consumers about the impact of cancer on patients and families after treatment ends, and to stimulate new research.

  In addition, OCS is collaborating with other NCI researchers in a working group on diet, weight, and physical activity to review the state of the science in these key areas and develop recommendations to address research needs and priorities.

  Rowland, who had been on the faculty of Georgetown University, became director of OCS in September 1999. Founding director of the office, Anna Meadows, M.D., who served part-time since the establishment of the office in June 1996, has returned to academia at the University of Pennsylvania and the Children's Hospital of Philadelphia.

  Rowland received her Ph.D. in Developmental Psychology from Columbia University Teachers College and served a post doctoral fellowship in the Psychiatry Service, Department of Neurology, Memorial Sloan-Kettering Cancer Center from 1984-86. She later joined Memorial's attending staff and helped establish, and became the first director of, their post-treatment research program, a ground-breaking center for providing non-medical services to cancer survivors and their families. Most recently, she served as an associate professor in the Department of Psychiatry, Georgetown University School of Medicine, where she established the Psychooncology Program. She has conducted extensive research on the psychological, social, and sexual effects of breast cancer on survivors, and was co-editor of the first textbook of psychooncology, with Jimmie Holland, M.D., entitled Handbook of Psychooncology.

  For more information about cancer visit NCI's Web site for patients, public, and the mass media at http://www.nci.nih.gov.