Love her or hate her, Angelina Jolie makes news. So when the actress recently announced that she had gone through genetic testing for breast cancer, people took note. And when she revealed that she’d chosen to get a double mastectomy as a result of those tests, she made women across the country start to wonder if they needed to get the same kind of genetic screening — and face the same tough decisions.
Here’s what you need to know if you are worried about hereditary breast cancer: Your risk is probably low. “Most people have overestimated their lifetime risks,” says Robin Bennett, codirector of the University of Washington Genetic Medicine Clinic.
What’s more, hereditary breast cancer is not common. According to the National Cancer Institute (NCI) at the National Institutes of Health, such cancers make up an estimated 5 to 10 percent of all breast cancer cases.
If you have certain gene mutations, however, your risk of getting breast cancer becomes much higher than average. The primary culprits are two genes, known as BRCA1 and BRCA2. Harmful mutations in those genes are linked to 25 to 30 percent of all hereditary breast cancer.
The increase in risk is high. The NCI estimates that about 12 percent of the women in this country will be diagnosed with breast cancer at some time in their lives. But for women with a harmful mutation in BRCA2, the NCI reports, research shows that number climbs to 40 to 45 percent. With BRCA1, it is a whopping 55 to 65 percent, with some estimates going even higher.
Should you get tested? Lorraine Naylor, a genetic counselor, says certain “red flags” increase the likelihood that you’ve inherited a gene with a harmful mutation. These include having a family history of similar cancers, or an Ashkenazi Jewish or Norwegian background.
Even for women with some risk factors, however, testing may not be called for. Bennett often goes through initial counseling with a woman to find that her recommendation is not to test. Each woman’s situation, history and risk are different, says Bennett.
Bottom line? If you have no risk factors, you probably don’t need to be tested. But if you’re worried, it can’t hurt to ask questions.
As Bennett points out, “Getting information can often be all you need to relieve some stress.”
Kathryn Russell Selk is a freelance writer and public defender who works and writes in Seattle.
Genetic testing for breast cancer: Common myths
• My insurance won’t cover it. Many plans cover testing for women with high risk factors. And under the Affordable Care Act, more insurers are expected to have to pay for genetic testing for such women.
• I can’t afford it. If you pay for testing yourself, you may pay between $2,000 and $4,000. But costs are coming down because of a recent U.S. Supreme Court decision. A genetic research company had initially patented the BRCA1 and BRCA2 genes, but last June, the court rejected the idea that genes could be patented, paving the way for more variety in testing and more research on hereditary breast cancer. Within two weeks of the decision, competitors began rolling out their own BRCA1 and BRCA2 tests at a cheaper price.
• Only the medical histories of the women on my mom’s side of the family are relevant. The genes identified so far as culprits in hereditary breast cancer are not limited to women; there is a 50 percent chance your dad might have given them to you.
• If I have a mutation, I will get breast cancer. Not all mutations are “harmful” or cause hereditary breast cancer. And again, while having a harmful mutation means you have an increased risk, it does not mean you are guaranteed to get breast cancer.
• Everyone could benefit from a test. Testing is not always the right choice for everyone. And the decision to test can have some risks. While a 2008 federal “nondiscrimination” law aims to prevent health insurers and employers from discriminating against women who test positive for harmful mutations, it does not apply to other types of insurance, such as disability or life.
• Only my breasts are involved. The same mutations that show an increased risk for breast cancer are also linked to higher risks of ovarian cancer. In fact, says genetics counselor, Lorraine Naylor, BRCA mutations have been found to be responsible for more ovarian cancers (10 to 15 percent) than breast cancers (5 to 10 percent). The National Cancer Institute reports that harmful BRCA1 mutations have been linked to increased risk of fallopian tube and peritoneal cancer, and other links are being studied as well.
• My general practitioner can do the test. It’s possible, but may not be a good idea. Many physicians are not well versed in the complexities and nuances of genetic testing, UW geneticist, Robin Bennett explains.
• Testing won’t have an effect on me. There is an emotional impact from such testing, and for some women, “knowing may make them feel worse,” says Bennett. It is important to understand and honor your fears — and those of your family — throughout the process, even if you decide testing is not right for you.
• Mastectomy is my only option if I have a harmful mutation. “This is one of the most common misconceptions about BRCA genetic testing,” Naylor says. In fact, other options exist, such as more aggressive screening and medicines such as Tamoxifen.
• We already know everything about genetic testing and causes of hereditary breast cancer. We are learning more every day. For example, just this past July, a study published in The Journal of Experimental Medicine broke new ground in explaining just how the mutations in one of the most significant of the “breast cancer genes” may work to increase the likelihood of cancer.
Want more information?
The NCI’s website has a detailed fact sheet about genetic testing for breast cancer, focusing on the two most significant genes involved (BRCA1 and BRCA2). Visit http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA.