5 Things You Need To Know: Previvor Edition

WHAT IS A PREVIVOR?

Someone who identifies as a previvor usually has a hereditary risk of breast cancer or ovarian cancer, genetic or familial and has opted to undergo prophylactic treatment as a preventative measure. This treatment may include a mastectomy, with or without reconstruction, hormonal therapy or a combination of the two. There are some people who identify as previvors who are opting for surveillance instead of medical treatment to reduce their risk of breast cancer.

If you are unsure about whether you are high risk for cancer, it is a good idea to speak to your doctor and go over your family history and health history.

WHERE DID THE TERM COME FROM?

The term “cancer pre-vivor” arose in 2000 from the organization, FORCE, which stands for “Facing Our Risk of Cancer Empowered.” Founded by Sue Friedman in 1999, FORCE acts under the principle that nobody should face hereditary cancer alone. FORCE’s mission has always been to include all who have been affected by hereditary cancer, which includes 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.

According to FORCE, prior to 1999, the medical community used the term “unaffected carrier” to describe those who have a gene mutation but have not had cancer. Some women felt this was dismissive of people who face the fears, stress, and difficult choices that accompany an increased risk for cancer and wanted a label to identify these challenges.

WHAT STRUGGLES TO PREVIVORS FACE?

Previvors have unique needs from people with cancer such as active surveillance, testing and the need to make treatment decisions based on their risk for inherited cancer. For some people this can lead to fear and anxiety or even depression. You can read a more in-depth list of what previvors face here.

In addition to the personal implications of being high risk, there is also the added complication of having to communicate with family members about what the risk may mean for them. This can cause more stress given people’s personal preferences around genetic testing and healthcare choices.

WHAT DO PREVIVORS NEED?

Finding out that you are high risk and identifying as a previvor can be scary. There is a lot of information to absorb and a lot of decisions to be made. As we always say at Rethink, knowledge is power. Getting yourself informed with the right information, at the right time can help you make an informed decision that aligns with your health, personal values and circumstances. This type of shared decision-making is a process that may require some additional support from other previvors and professionals.

Check out organizations like HBOC Society, Bright Pink and FORCE to find evidence-based information and a community of support.

DOES EVERYONE IDENTIFY WITH THE LABEL PREVIVOR?

There is some confusion or controversy about the term previvor within the cancer community. Some women with breast cancer feel that the word “previvor” is offensive, demeaning and a slap in the face to women who have had breast cancer and identify as “survivors.” Other people feel as though it pathologizes a person’s experience when they have not had cancer contributing to the stress and anxiety they may be facing. Some women do in fact identify with the cancer community, even though their health risk and mortality statistics are very different from that of someone with a cancer diagnosis.

This “us vs them” mentality is a disservice to all women who are struggling with their risk or with cancer. Being able to self-identify with whatever label one wants is empowering when it comes to getting the support and finding a community that accepts you for who you are. After all, that is what we all need no matter what we are facing.

WANT TO KNOW MORE ABOUT THE EXPERIENCES OF WOMEN WHO ARE CONSIDERED HIGH RISK? CHECK OUT RETHINK’S DOCUMENTARY HIGH RISK HERE.