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Previvors: The Growth of a Voice

by Karen Dyer

The term “cancer previvor” describes individuals who are survivors of a predisposition to cancer but who have not had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. They may face multiple risks not wholly shared by the general cancer community, including a higher lifetime risk for cancer, a tendency for onset of cancer at an earlier age, a higher likelihood for multiple cancers, and a risk that can be inherited. Because they are at higher risk, this group faces difficult decisions regarding risk management and surveillance.

Until recently, no single term accurately depicted the predicament in which individuals in the high-risk cancer community find themselves. The medical community uses the term “unaffected carrier” to describe this population, but this term does not capture the full experience of those who face an increased risk for cancer or the need to make medical management decisions. In 2000, however, FORCE responded to a request by member Cathy Beaudoin, who posted on the message boards: “I need a label!” Deciding “unaffected carrier” was not only inadequate but inaccurate, FORCE and its members felt previvor best described this special community.

Since FORCE adopted this term, it has become increasingly recognized and utilized not only within the high-risk community, but among specialists in the medical community as well. It is a unique identifier for a unique group of women—one that carves out a niche for a community that is increasingly receiving the attention and focus it deserves. For Cathy, the complexity of the term “matches the complexity of the situation. It’s a word that stops people, makes them wonder what it is, ask questions, and prompts for more dialogue.”

The growing popularity and usage of previvor indicates the rising influence of an increasingly organized, unified and cohesive voice. For individuals who are newly identified as being at higher risk of cancer, having a label creates a sense of community, belonging and friendship. For them, previvor speaks specifically to their situation and describes their needs. Cathy notes, “Having a group that is identified in a tangible way validates your situation and provides some sort of comfort in a new and scary situation.”

Until recently, existing legislation, medical interventions, and psychosocial support networks have not focused attention specifically on the needs and voices of the high-risk community. The use of the term previvor facilitates the growth of a unified voice that is necessary for our community to be heard. FORCE hopes this will result in increased funding, research and legislation. Cathy wants the term to become as well-known and well-used as cancer survivor has become. “I would like people to know the term, to understand it, to have it become common lingo among both the medical community and the lay population.”

Karen Dyer is the FORCE Director of Programs.

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