Note: In honor of National Previvor Day, I’ve updated this blog post, which was initially published in 2008 but is still relevant today.
by Sue Friedman
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.
Not everyone loves the term, I can understand that. Sharing the history and reason why the term was coined can bring attention to, and provide insight into the important and unique situation and needs of people who are at very high risk for cancer.
The Early Days
In 1998, after finishing my treatment for breast cancer and after learning that I had a BRCA2 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 had instant access to support and resources. 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 mutation has been found. FORCE was also established to provide a home and safe haven specifically for high-risk people 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 applies to people regardless of their medical choices, surgery, surveillance, risk-reducing medication, or other; all people at high risk for cancer must face difficult decisions about risk management, and their consequences. Simply put, if you have not had cancer but know that you have a mutation that greatly increases your risk of cancer, or if you come from a family with a strong history of cancer but no mutation has been found then you are a previvor, and FORCE is here for you.
Growth of a Movement
Over the years the term previvor has been incorporated into the cancer 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 December 2007, Time Magazine chose “previvor” as #3 of the top buzzwords of 2007 giving millions of people exposure to the term. And due to high-profile celebrities sharing their story about genetic testing, the term Previvor is now linked to famous names like Angelina Jolie.
And as the collective voice and power of the previvor community grows awareness, it also drives advances in prevention research, such as the WISP Trial which is looking at outcomes in women choosing to remove their fallopian tubes only and delay ovary removal, and a study examining whether the diabetes drug metformin can reduce breast cancer risk in high-risk women. Studies like these are only possible if we can motivate and mobilize people at high risk for cancer to participate in research.
The explosion of genetics technology has led to the discovery of many other genes that predispose people to cancer. As more people test positive for mutations in ATM, PALB2, CHEK2, BRIP1, or other genes associated with cancer risk, they need information and resources to make informed decisions about their health. This new generation of previvors face challenging medical decisions that are similar to, but yet distinct from people with BRCA mutations. They have an ongoing need for more research and support. In some ways, their situation is like the previvors I first met in 1999 when there was little awareness, research or support for people with a BRCA mutation. It is important that we embrace all members of the HBOC community and assure that they do not have to face hereditary cancer alone.
Previvorship for the Next Generation
Previvors face challenging medical decisions. Although we have the power to prevent some hereditary cancers, it is not enough. We have the technology to identify high-risk people and yet many people remain unaware of their risk until after a cancer diagnosis. The cost of genetic testing has gone down substantially, yet there are still barriers to genetic information and services for too many people. Risk-reducing surgery, although life-saving, is not what we want for future generations. We must continue to push for progress for the benefit of future generations of previvors.
In 2000 when the term was first coined, most previvors faced medical decisions in vacuum. Sixteen years later, the situation is better than it was, but we still have a lot of work left to do. Fortunately we have a large, strong, motivated, and and amazing community that is up for the challenge.
Be empowered and be well!
Tags: previvor;pre-vivor;high-risk;breast cancer risk;ovarian