Use of the term “previvor” has become common, which, in my opinion is good for our community. Since popularization of the term increases the chance that its meaning and origin can get lost or forgotten, a post on the origins and future of the term seems timely.
I have seen some people react strongly (with intense like or dislike) to the term, which I can understand. By sharing the history and reason why the term was coined I hope to help people accept or at least understand the intent and meaning behind the creation of the term.
In 1998, after finishing my treatment for breast cancer and after learning that I had a BRCA 2 mutation, I sought out breast cancer support groups. Because of the hereditary component to my cancer, I felt that others in the group couldn’t relate to many of the issues I was facing. My needs were not entirely met by the standard cancer support group model. Along the way I met women who were high-risk because of a BRCA mutation or other risk factor but who did not have cancer. These women became my friends and inspiration; certainly they were facing difficult decisions and issues that most of their friends couldn’t understand or relate to. With a diagnosis of cancer I immediately joined an already well-established community (albeit one I didn’t want to belong to) and instant access to support and resources via great organizations such as Gilda’s Club, the Wellness Community, and local support groups. Sadly, I noticed that many of my new high-risk friends without cancer felt alone, and not comfortable with using resources and forums created specifically for people with a cancer diagnosis.
I founded FORCE in 1999 under the principle that nobody should face hereditary cancer alone. Our goal has always been to include all who have been affected by hereditary cancer: those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found. FORCE was also established to provide a home and safe haven specifically for high-risk women who had very few other safe and supportive places to share their common experiences.
The term “cancer pre-vivor” arose in 2000 from a challenge on the FORCE message board by Jordan, a website regular, who posted, “I need a label!” At that time I knew that the medical community had a label: the term “unaffected carrier” is used to describe those who have a gene mutation but have not had cancer. The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer. As a result, FORCE developed and promoted the term “cancer previvor” for “survivor of a predisposition to cancer.” The term includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor who are living with the knowlege of being high-risk.
Over the years the term previvor has been incorporated into the FORCE lexicon. Due to the enthusiastic use by our community and the medical community’s lack of a better word, the term has slowly been accepted by the medical and research community. In 2007 a series of high-profile articles in the New York Times brought public attention to the term and the serious issues that cancer previvors face. In December 2007, Time Magazine chose “previvor” as #3 of the top buzzwords of 2007 giving millions of people exposure to the term.
What does the future hold for the term and the community? The explosion of genetics research has led to the discovery of genes that predispose people to many different diseases. One of the powerful promises of genetics research is the ability to better predict risk and develop effective strategies to prevent diseases like cancer before they develop; this is an area where we have great potential to make an impact on the wellbeing of this and future generations. With the discovery of more genes that predispose to an assortment of diseases; cancer, diabetes, Alzheimers, we can expect that more people will learn that they are at high-risk for something. And risk is a spectrum: not all risk is created equal. Someone with a 25% lifetime risk for breast cancer for example,(compared with the population risk of 12.5%) may have a different set of issues to face and choices to make than someone with an 85% lifetime risk for the disease. These emerging “previvors” will face new challenges and dilemmas that may be different from those faced by the BRCA community but which require a new set of devoted resources. Through recognition and awareness of the unique issues each high-risk group faces we can begin to address their information, resource, and research needs. Perhaps this will require the development of a government agency–maybe an “Office Of Previvorship” (OOPs for short?)–with committed resources and funding to study and try to meet the medical and emotional needs of those who have hereditary predisposition to diseases.
The development and success of the term previvor is just one example of FORCE’s continuing role in uniting and providing a strong voice for families touched by hereditary cancer. For more information on FORCE and our programs, visit our website at facingourrisk.org.Tags: previvor;pre-vivor;high-risk;breast cancer risk;ovarian