Published on April 28, 2020
Patient activist Andrea Downing was 25 years old when she discovered she had the BRCA1 gene mutation that can cause breast and ovarian cancer. Breast cancer moved through her family’s line; her great-grandmother, grandmother and mother had all experienced the genetic fate that ultimately led to her big decision.
Andrea decided to have a prophylactic (preventative) mastectomy. Doing so made her a previvor, a term used for someone who took measures to prevent the cancer that certain genetic mutations put them at high risk for. For Andrea, her risk of developing cancer was 87 percent, and that was not a gamble she wanted to take.
The Road to Previvorship
Prevention is key, but the worry of watchful waiting can be too much. Many women at risk for breast cancer are opting to undergo a mastectomy before cancer appears. In fact, the numbers tripled in the last decade.1 Women at risk for ovarian cancer may opt to undergo an oophorectomy to remove the ovaries. Ovarian cancer is particularly challenging to diagnose in early stages and thus, harder to treat in the long run.
Suggestions for women who might be at risk:
- Ask your closest relatives (on dad’s side too) about breast cancer diagnoses in the family.
- Consider genetic testing.
- If you find out that you are a carrier of a gene that increases your risks for cancer, a genetic counselor will refer you to an oncologist to discuss next steps.
- A genetic risk assessment can also help determine your risk of developing cancer.
- Find a therapist to help you navigate what may become your cancer journey.
Andrea created a website, Brave Bosom, to chronicle her journey but also to serve as a source of information for others with questions about cancer treatment, side effects, medical policies and activism for patient data privacy.2 When she discovered a data breach within Facebook groups, where people were sharing personal medical information, she became a vocal supporter of patients’ data rights. Andrea is also part of The Light Collective, a team of patient activists, coders, health experts and data journalists that seek to ensure the privacy of 10,000 cancer previvors and survivors on Facebook, which put the data of millions at risk.3
Join the FORCE
Facing Our Risk of Cancer Empowered (FORCE) is an online community that helps people and their families who are at risk for hereditary breast, ovarian and related cancers. FORCE is a supportive community that advocates for research and works with medical communities. They are tireless advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance and privacy.
One in eight women will be diagnosed with breast cancer in her lifetime. With time, testing and prevention strategies, the goal is to reduce that number in the future. Being your own best advocate is the most important step in achieving this goal.
~Lauren Evoy Davis
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
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- Prophylactic Mastectomy Rates Have More Than Tripled in Past Decade. https://www.breastcancer.org/research-news/prophylactic-mx-rates-tripled-in-a-decade
- Brave Bosom. https://bravebosom.org/
- The Light Collective. https://lightcollective.org/story/
- Facing Our Risk of Cancer Empowered (FORCE). https://www.facingourrisk.org/index.php