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    No.183: What Previvors Need To Know About This Genetic Predisposition

    Previvor - What Previvors Need To Know About This Genetic Predisposition 

    Does breast cancer or ovarian cancer run in your family? If so, you may have heard of the term “previvor.” Here’s what you need to know about being a previvor, and the measures you may want to take to reduce your risks of developing serious illness.

    Breast cancer previvor

    What Is A Previvor?

    A previvor is someone who may have a higher risk of developing breast cancer or ovarian cancer due to a genetic predisposition. You’re a previvor if you have never been diagnosed with breast cancer or ovarian cancer, but you have a strong history of breast cancer or ovarian cancer in your family, and you have tested positive for a genetic mutation that indicates you may be much more likely to develop these cancers.

    What Is The BRCA Gene, And What Does It Have To Do With Previvors? 

    The BRCA (pronounced BRA-cah) gene, also called the “breast cancer gene,” has two varieties: the BRCA1 gene and the BRCA2 gene. The BRCA gene and its mutations are responsible for repairing DNA breaks that could lead to cancer development. However, if your BRCA1 and/or BRCA2 genes are mutated, you’re more susceptible to developing breast cancer or ovarian cancer at a young age. In addition, if you have the mutation, you’re at risk of developing a secondary cancer, because the mutation could mean  cancerous cells grow unchecked  in your body. A BRCA mutation makes you a “previvor.”

    Around 1 in 400 women in the United States are estimated to have a BRCA gene mutation. Some communities, such as the Ashkenazi Jewish community, have much higher BRCA gene mutation rates:  Nearly one in 40 women in this group have a BRCA gene mutation. By age 70, around 55 to 65 percent of women who have a BRCA mutation will develop breast cancer.  Similarly high rates for ovarian cancer are a risk for those with the BRCA gene mutation. Although fewer than 2% of women will develop ovarian cancer, up to 44% of women with a BRCA1 mutation and up to 17% of women with a BRCA2 mutation are likely to do so.

    If you discover that you have a gene mutation, there are plenty of actions to take to manage your risks – you’ll learn about them later in this guide. 

    What Struggles Do Previvors Face?

    Being a previvor can be as daunting as being diagnosed with cancer. Learning that you’re at higher risk of developing the disease can be emotionally taxing, as it comes with a lot of uncertainty and significant decisions to make -- or not make. If you’re a previvor, you may face:

    • The constant fear that you or a loved one may develop cancer
    • Increased screenings, some of which may be invasive
    • Tough decisions to make about preventive measures and treatments
    • Depression or anxiety relating to the emotional toll of your diagnosis 
    • Issues in your relationships with friends or your significant other

    How Can A Previvor Manage Their Risk Factors?

    The good news about being a previvor is that you can take measures to mitigate your risk of developing cancer. Three of the most common ways to manage your risk factors include:

    • [note] Frequent monitoring and screenings.Where women without the BRCA gene may get mammograms every other year or so, previvors like you will likely go much more frequently, depending on your age and family history. You may also begin screenings at a much younger age. These frequent screenings can help catch cancer in its early stages and treat it before it evolves into something more aggressive. Since there are fewer ways to screen for ovarian cancer, it’s important to speak with your doctor about the warning signs you need to look out for.
    • Medications. Some medications can decrease the chance of breast cancer by lowering the levels of specific hormones in your body. If this sounds like a route you’d like to take, speak to your doctor.
    • Preventive surgery. Removal of breast tissue (mastectomy) or ovaries (oophorectomy) may be the right option for you, depending on your age and other risk factors. These preventive procedures remove the tissues where cancer is likely to take root and spread. However, these procedures come with risks, and they may not be for everyone. Speak with a genetic counselor or other specialist to learn if a preventive surgery is best for you.

    When Is Previvor Day?

    National Previvor Day is the last Wednesday of September, right at the end of Ovarian Cancer Month and right before Breast Cancer Month begins the following month. It’s a day to raise awareness about being a previvor, advocate for previvors, and encourage women to get tested for the genetic mutation.

    Resources For Previvors

    Being a previvor comes with a lot of questions and a whole host of  new responsibilities as you learn your options. Surgeries, medications, and frequent monitoring are now possibilities in your world. You shouldn’t have to go it alone, and the good news is that you don’t have to navigate these decisions by yourself. There are plenty of resources and communities available to help. 

    Here are a few great resources to look into for more information:

    Dana Donofree

    Dana Donofree

    Founder and CEO of AnaOno. After a diagnosis of breast cancer in her late 20’s, Dana took her own lived experience and fashion design background and (re)designed intimates for those that have undergone breast surgery. Dana’s story has been published around the world in outlets like New York Times, BBC, Huffington Post, The Today Show, and more.