Publications > Newsletter
Winter 2006
Contents
Looking Forward to "Looking Back, Living Forward"
PROSE: Research Provides Answers
BRCA1/2 Mutations Cause Many Ovarian Cancer Cases
Pre-vivors
(to search past issues of our newsletter)
Pre-vivors: The Growth of a Voice
by Karen Dyer
The term cancer pre-vivor 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 diffi cult decisions regarding risk management and surveillance.
Until recently, no single term accurately depicted the predicament in which individuals in the highrisk 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 pre-vivor 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 identifi er 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 pre-vivor indicates the rising infl uence 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, pre-vivor 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 pre-vivor facilitates the growth of a unifi ed 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.
Promoting the Concept of Pre-vivorship
FORCE is undertaking the Cancer Pre-vivor Campaign to educate and inform others about breast and ovarian cancer pre-vivors—the decisions they face and the resources they need. As we continue to build awareness and provide support for those with a BRCA mutation, there is much more to be done. We must also inform and educate the public, the medical community and our elected leaders about the issues and needs of those with genetic mutations, so BRCA-positive individuals needn’t be afraid to voice their confusion nor fear reprisal.
FORCE has worked hard to successfully build awareness throughout the medical community and among families of those who may carry a BRCA mutation. You can help FORCE promote the concept of pre vivorship by supporting our Cancer Pre-vivor Campaign:
- use “pre-vivor” when describing the high-risk population
- tell your cancer pre-vivor friends and relatives about FORCE
- tell your medical team about FORCE*
- refer the media to FORCE to improve coverage of our campaign and raise awareness of the unique needs of the pre-vivor community.
*Introduce your physician, genetic counselor, family member or friend to FORCE services. Visit our website for comprehensive information for those interested in BRCA mutations. You can also access and download copies of FORCE brochuresor newsletters; order these publications or sign up for our newsletter mailing list.
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