My Mom Had Breast Cancer—Here’s Why I Won’t Get the BRCA Test
A simple blood test could determine whether I have a gene mutation that puts me at high risk of developing hereditary breast cancer—but for now, I'm taking a pass.
In January 2002, I got a phone call that would change my life. It was my mother, letting me know that her biopsy results were in: As we’d feared, the lump in her right breast was cancer; it was Stage 3 and had spread to her lymph nodes. She was the first in our family to be diagnosed with this reproductive cancer. As her first-degree relative, my likelihood to develop the disease doubled at that moment, according to Breastcancer.org
Of course, there is no crystal ball that can determine whether a person will get breast cancer, but there are medical tests that can predict the risk. One of them—genetic testing—looks for mutations of BRCA1 and BRCA2 genes, which produce tumor-suppressing proteins. The test first hit my radar in 2013, when Angelina Jolie penned a now-famous op-ed in the New York Times revealing that she’d undergone an elective double mastectomy (and oophorectomy, or ovary removal) after testing positive for the BRCA1 mutation.
Jolie urged women to get tested—and many did. In the weeks following the op-ed’s publication, there was a 64 percent spike in genetic testing among American women reported in the British Medical Journal. I was not one of them, and I won’t be, because I refuse to take the BRCA test—for now, anyway—even though I’m at high risk for breast cancer. Here are five surprising facts you didn’t know about the BRCA genes.
This is not because I’m in denial. Quite the opposite, in fact: I’m hypervigilant, and I’ve had more than 16 years to let the possibility sink in. It’s because the Genetic Information Nondiscrimination Act (GINA), the law that protects people with BRCA gene mutations from being denied health insurance, does not extend to life insurance, disability, or long-term care insurance. This means a person can be denied life insurance because they test positive for the BRCA1 mutation; up to 65 percent of people with that test result (and up to 45 percent of people with BRCA2 mutations) will develop breast cancer by age 70, according to the Susan G. Komen Foundation. That also means many people with the mutations will not get sick, of course, but their rate of discrimination would theoretically remain the same.
If my mother had been tested for these gene mutations and received a positive result, I’d at least know that my risk is 50 percent. But she never was, and though she had been a 16-year breast cancer survivor, she has since passed from a different disease. The way I see it, my risk is 50/50. The majority of breast cancers are not genetically inherited anyway, according to the Susan G. Komen Breast Cancer Foundation.
So I’m proceeding as if I do have a BRCA gene mutation. Here’s what that means: People with BRCA gene mutations are encouraged to start getting mammograms by age 30, and continue to get them every year. Contrary to common belief, mammograms do not cause cancer. They’re also encouraged to exercise, as this seems to lower the risk specifically for carriers of the mutation (breastfeeding has been shown to as well). These guidelines have been pretty easy to follow, no test needed. Find out the breast cancer myths you can safely ignore.
But when it comes to a prophylactic double mastectomy—like the surgery Jolie got—things get a little murkier. Some insurance companies will often cover preventative mastectomies (and reconstruction) in part or full, especially for those with BRCA mutations, according to the Susan G. Komen Foundation. Treatment like this can cost between $15,000 and $50,000 out of pocket. If anything would convince me in the future to take the BRCA test, it would be a medical expert’s opinion based on my yearly mammograms and family medical history that I undergo preventative surgery. The Mayo Clinic reports that this would reduce to my risk by up to 90 percent.
But frankly, the reality of that surgery is too scary for me to consider right now. And if I’m going to be honest, I’ll admit that I have a (perhaps irrational) fear that, along the way, the GINA law will also be amended to allow for health insurance providers to discriminate against people with positive BRCA results, too. I wouldn’t be able to “untake” the test.
Luckily, there are still effective options should I continue to forgo genetic testing and preventative surgery in the long run. Breast ultrasounds can be done in conjunction with mammograms to help diagnose abnormal findings—and I can follow in the footsteps of other high-risk women and start getting examined twice a year instead of once. Doctors can also prescribe me drugs like tamoxifen and raloxifene—known as chemoprevention drugs—when I’m post-menopause to reduce my risk of breast cancer.
And for now, that’s good enough for me. Now, find out the 50 everyday habits that can help reduce your risk of breast cancer.
- Breastcancer.org: “Family History.”
- New York Times: “My Medical Choice.”
- British Medical Journal: “Do celebrity endorsements matter? Observational study of BRCA gene testing and mastectomy rates after Angelina Jolie’s New York Times editorial”
- Genetic Alliance: “Genetic Information Nondiscrimination Act (GINA)”
- Susan G. Komen Foundation. “BRCA 1 and BRCA 2”
- Susan G. Komen Foundation: “Preventive Surgery”
- The Mayo Clinic:”Preventive (prophylactic) mastectomy: Surgery to reduce breast cancer risk.”
- Susan G. Komen Foundation: “Breast Ultrasound.”
- National Cancer Institute: “Surgery to Reduce the Risk of Breast Cancer.”