What's in a name: who is a cancer survivor?

To a layman, the term " cancer survivor " might suggest a person who has beaten their cancer. But to those in the cancer field, it means any number of things, from " patient " to someone who is " post treatment, " to a person who is cancer free but cares for a loved one with the disease. In fact, the definition of the word has become so muddy that the organization that pushed for its use several decades ago is now saying that a new definition is needed. What is meant to be a motivating psychosocial term is increasingly being co-opted by researchers to define their own areas of interest, said Ellen Stovall, president of the National Coalition for Cancer Survivorship (NCCS), which calls itself the oldest " survivor-led " advocacy organization in the nation. " There is a lot of confusion and turmoil surrounding the word. In order to establish a field of study, some people have adapted the word to suit their own needs—to delineate a research agenda, " she said. " The NCCS has never tried to force the word into a realm of science, where it wasn't relevant. It is descriptive, not meant to be biologically correct. " The NCCS put forth a definition of cancer " survivor " in 1986 at a time when cancer was a disease that people needed to learn to fight. The word, Stovall said, was designed to empower patients to make decisions about their care and to push for better research and treatment. And because so many people are " touched by cancer, " the NCCS definition of the term also included families and caregivers of cancer patients. But the advocacy definition of " survivor " also recently made it to the National Cancer Institute, which formally defines the word on its Web site: " An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition. " The NCI counts a diagnosed individual who is still living as a survivor no matter when that diagnosis was made or whether it was successfully treated, but it does not incorporate family and friend figures into statistical reports, said Julia H. Rowland, Ph.D., director of the Office of Cancer Survivorship. The definition was …