NIH News Release
National Cancer Institute

Tuesday, December 14, 1999

Contact: NCI Press Office
(301) 496-6641

Cancer Survivorship Research and Support

As more people than ever survive cancer and live longer, the National Cancer Institute (NCI) has stepped up efforts to study and support this growing population.

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."


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: