Some cancers are tied to hereditary or genetic factors which can make you more susceptible to developing cancer at a younger age. This community of individuals, called “previvors” by some, face unique health challenges that can be addressed with proper assessment and care. Here, learn who is considered a previvor and how to find support if you are a previvor.
What is a previvor?
A Previvor is a person who has tested positive for a genetic mutation that predisposes them to develop cancer. If you have a significant family history of cancer, you may identify with the term “Previvor.” Some Previvors choose to undergo surgery to mitigate the chance that they develop cancer.
The term was created by a group called FORCE (Facing Our Risk of Cancer Empowered), an organization dedicated to raising awareness of the hereditary risks associated with certain cancers. The group was founded by Sue Friedman. Sue received a breast cancer diagnosis at age 33 and later discovered that she carried a mutation of the BRCA2 gene, which is associated with a higher risk of breast and other cancers.
How do you know if you are a previvor?
If you think you may be a Previvor, consider making an appointment with an oncologist or high-risk geneticist for a cancer risk assessment. This medical professional can help evaluate your family history, lifestyle, and other risk factors that may mean you are more predisposed to developing cancer. Your situation could call for a blood test to identify gene mutations that impact your cancer risk.
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The BRCA gene mutation: the most well-known previvor risk factor
If you are first learning about the term “previvor,” you may have heard of one of the most well-known previvor risks: a BRCA gene mutation. When functioning properly, the BRCA gene, of which there are two known variants — BRCA1 and BRCA2 — produces DNA that suppresses tumors and controls the rate of cancer growth.
Some people inherit a mutation of this gene which makes them more susceptible to developing breast and ovarian cancer at a younger age, and oftentimes, a more aggressive cancer. Those who carry the mutation are at exponential risk of developing a secondary cancer, since the malfunctioning gene may accelerate the spread of cancerous cell growth in other organs. Actor Angelina Jolie made the BRCA gene a household name after undergoing a preventive double mastectomy in 2013 based on the results of her genetic test.
BRCA gene mutation stats
According to the U.S. Centers for Disease Control and Prevention (CDC), approximately 1 in 500 women have a BRCA gene mutation. Women of Ashkenazi Jewish descent have a much higher risk of the BRCA gene mutation, about 1 in 40. CDC statistics show that 50 out of 100 women with a BRCA1 or BRCA2 mutation will develop breast cancer, while 30 out of 100 women with the mutation will develop ovarian cancer. Risks in the general population are 7 out of 100 women and fewer than 1 out of 100 women respectively. While the risk factor is diminished in men who carry the mutation, they are 25% more likely to develop prostate cancer compared to the general population’s risk of 16%.
You may choose to take preventive action if you learn you have a BRCA gene mutation to manage your cancer risks. Your doctor may recommend earlier and more frequent screenings to help catch the disease early. A preventive mastectomy or oophorectomy may be an option as well, as decided by you and your medical team. Additionally, non-surgical options are available. Chemoprevention includes a routine course of tamoxifen to reduce the lifetime risk of both breast and ovarian cancers in previvors.
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How to find previvor support
Previvors face unique challenges. If you are a previvor, you may feel anxious about the possibility that you could develop cancer. You may also face difficult decisions about your health, such as removing breast tissue or healthy ovaries, to help reduce the chance that you develop cancer. These are not easy decisions to make, and navigating your options alone is a daunting task.
You may want to enroll the help of a genetic counselor who can help you make sense of your risk as a previvor. A genetic counselor provides support, education, and assessment of your situation. They can also help you evaluate your options to mitigate cancer risk. It is important to understand the range of risk-management options available to previvors; each comes with its own distinctive set of considerations. Consulting with a fertility specialist is often an early step in the process for many women.
You may also want to reach out to a previvor support group or organization to connect with others facing similar situations. The decision-making process of managing your mutation can be incredibly overwhelming. Having peers to affirm your choices and offer feedback and tips is essential to living with cancer risk. Some helpful groups include:
Should you elect to undergo preventative surgery, organizations like Mend Together can help. Our free tools make it easy to organize support from friends or family. You can use our Community Journal to keep your loved ones updated and receive encouraging messages along your journey. Setting up a Volunteer Calendar will get you the practical, everyday help you need while creating a Gift & Donation Registry allows friends and family to send practical gifts that can help speed healing after an elective mastectomy and oophorectomy, as well as make financial contributions to help offset the costs associated with this medical intervention.
The Previvor Experience
“My unexpected BRCA2 diagnosis turned my life upside-down and forced my hand at making what felt like a series of impossible decisions. Those of us with genetic mutations live adjacent to the cancer battles many folks are burdened with. There is a constant fear looming that our number will be called at any time, and we grieve the peace we may have known otherwise. My loved ones were grieving alongside me, unsure of how best to support me. When I made the decision to move forward with a prophylactic double mastectomy, bilateral salpingectomy, and hysterectomy, I was so grateful tools like Mend Together exist so that the people who cared for me could provide me with tangible support. Being BRCA2+ can feel isolating, but the cancer community is a tight-knit shoulder to lean on when you need it most.”
— Megan Radich, BRCA2 Previvor/”Mutant” and Mend Together Community Manager
Final Thoughts on Previving
Whether you have a family history of cancer or carry a genetic mutation, previvors can make lifestyle changes that bolster health and immunity. A nutrient-dense, plant-based diet, regular exercise, cutting out risky behaviors like smoking, and reducing environmental exposure to harmful elements can all play a role in reducing your cancer risk.
Stella Morrison is an award-winning journalist who partners with mission-driven companies to share their stories. She is based in New York City.
Information provided here is not a substitute for medical advice. Please consult your healthcare team for advice tailored to your personal diagnosis and treatment.