The revelation of Angelina Jolie’s decision to undergo a preventive double mastectomy has opened a dialogue about breast cancer and those most at risk of getting it.
In an op-ed piece published in Tuesday’s New York Times, the Oscar-winning actress explained she decided to have the surgery after discovering that she has what she referred to as a “faulty” BRCA-1 gene.
Although a member of the general population has a 12% chance of getting breast cancer at some point in their lifetime, that likelihood jumps to 65% for someone who tests positive for the BRCA-1 gene, according to the National Institutes for Cancer.
Kathie-Ann Joseph, a breast surgeon at NYU Medical Center who’s cared for patients with the BRCA-1 gene, and Lindsay Avner, who underwent a preventive mastectomy at the age of 23 after discovering she also had the gene, joined PoliticsNation Tuesday to share their experience.
How to know if you should get tested
“It should come down to family history,” Dr. Joseph explained. According to National Cancer Institute guidelines, people should consider getting tested if they have two first-degree relatives–a sister or a mother–who’ve been diagnosed with breast cancer, especially if one was diagnosed before the age of 51.
The same goes for anyone with “multiple first and second degree relatives–those are grandmothers or aunts–who’ve been diagnosed with breast or ovarian cancer,” according to Dr. Joseph.
Family history is what compelled Avner to get tested.
“I have a very strong family history of both breast cancer and ovarian cancer–my grandma and great-grandma died a week apart both from breast cancer and my mom is an 18-year breast, 17-year ovarian cancer survivor,” she explained on the show. “I made the decision at 23 to remove my healthy breasts–because I wanted to be the first person after generations of women in our family to not develop this disease that had stalked us for so long.”
Female relatives are not the only factor to watch for. Anyone with a male relative with a breast cancer diagnosis should be tested too, along with anyone diagnosed with what’s called “triple negative breast cancer,” which Joseph points out is more common among African-American women.
And while the gene found more often in women of Ashkenazi Jewish descent, that doesn’t mean those are the only ones who should consider testing.
“This gene has been found in pretty much every ethnic group,” Joseph said.
If you don’t have insurance, the test can be expensive
While most insurance companies offer free or reduced-cost testing–and BRCA counseling about genetic testing for women must be covered by health insurance under the Affordable Care Act–it’s only required when the service is delivered by a network provider. Many women who don’t have health insurance will be faced with potentially high costs if they wish to undergo testing.
Currently only one company, Myriad Genetics, offers the test, which costs $4,000 for the uninsured. Myriad spokesman Ron Rogers has said that his company will administer the test for free or at a “greatly reduced cost” for patients without insurance.
The company’s monopoly has been challenged in court, and the Supreme Court heard arguments just last month in the case, where lawyers for the ACLU argued that the company should not be able to patent human genes like BRCA-1. Depending on how the Supreme Court rules, Myriad’s patent could be invalidated, allowing testing to become more broadly available and possibly driving costs down.
Jolie’s decision is not extreme, but it’s not for everyone
“I applaud her for being proactive, and that’s what this is about–being proactive about your health,” Dr. Joseph said, adding that some of her patients feel the gene is a “ticking time bomb” and insist on having the mastectomy, but that’s not the only option. “I have patients who have the mutation and they choose to be followed very closely with screening, MRI, ultrasounds, and mammograms.”
“It’s an option she chose and it works for her–you have to do what’s right for you.”
After her diagnosis, Lindsay Avner founded Bright Pink, a non-profit organization dedicated to the prevention and early detection of breast and ovarian cancer in young women. Learn more about their work at www.brightpink.org.