What Is A Previvor?

Health Writer
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Have your relatives had cancer – and you're wondering whether you are next? That’s what many "previvors" face. The word was created in 2000 by Facing Our Risk of Cancer Empowered (FORCE) to describe “individuals who are survivors of a predisposition to cancer but who haven’t had the disease." Breast and ovarian cancer previvors carry a hereditary mutation in BRCA1 and 2. They have not had cancer, yet, but they have an increased risk of getting the disease.

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A previvor is these things

If this is your situation, you may feel like you don’t fit in with cancer fighters or survivors; yet you also don’t feel completely healthy like most people you know. You are in a unique situation. But it’s important to know: there's a whole community of support and others living as previvors. When you are a previvor, you are:

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Curious

You want to know more about hereditary breast, ovarian, and other related cancers. You do your homework. FORCE has a series of publications to give you more information.

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Courageous

It takes strength and fortitude to live every day knowing that you have a high risk of getting cancer. It takes courage to deal with the options and to face your future armed with knowledge, resources, and a game plan. Get confidential personalized support from a trained peer navigator who shares a similar journey.

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Determined

Previvors are resolute about stopping cancer before it stops them. Women with a BRCA or other gene mutation face up to an 85 percent lifetime risk for breast cancer and up to a 44 percent risk for ovarian cancer – much higher than the general population. Just knowing that you are a carrier means you can proactively take care of your health. Sharsheret is one organization that can help you learn more about your family history and offer support along the way.

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Scared

You can be brave and scared at the same time. It’s never easy to face some of the decisions you may have to as a previvor. Join a local support group or find help from others in your shoes 24/7 on message boards. You can also call the FORCE helpline at 866-288-RISK to speak to a peer volunteer or a genetic counselor.

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Proactive

Previvors need to make important decisions about their present and future health. Some decide to be proactive and have a bilateral mastectomy to reduce their cancer risk. Others decide to step up their screenings and take other actions. If you need help paying for reconstruction after surgery, AiRS Foundation (Alliance in Reconstructive Surgery) may be able to help with a grant for those with financial need.

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Self-aware

If you decide to wait, watch, and monitor your health, you need to be self-aware of many things including how your daily lifestyle decisions play a role in increasing or decreasing your risk of cancer developing. Do self-exams and know what’s “normal” for your body; go for regular screening exams, and talk to your doctor about what steps to take to stay healthy.

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Active

If you decide to wait, watch, and monitor your health, you need to be self-aware of many things including how your daily lifestyle decisions play a role in increasing or decreasing your risk of cancer developing. Do self-exams and know what’s “normal” for your body; go for regular screening exams, and talk to your doctor about what steps to take to stay healthy.

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Driven

Take action to turn around your family’s cancer risk. Educate your family members so they, too, do genetic testing and maybe also genetic counseling to know if they are at high risk and can take appropriate actions. Learning your health history can be an important tool for you and your health care provider to understand and manage your risk for both breast and ovarian cancer.

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Aware

Many previvors channel their energy and work to advocate for resources, research, and funding for families facing hereditary breast and ovarian cancer. To get involved, contact FORCE or Bright Pink.

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You’re never alone

Knowing you are at an increased risk for breast and ovarian cancer can weigh heavily on you. But know that there is lots of help and support out there no matter where you are in your journey. Reach out!