Doctors are on alert for any signs of a tumor which, to my mind, meant a future of constant worry with lots of biopsies until, inevitably, a cancer diagnosis.
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High-risk monitoring means undergoing a mammogram and a breast MRI every year, six months apart. When it comes to breasts, there are two main options: high-risk monitoring or surgery. Here’s what I learned over the course of two months while I figured out my options: Because there are still no good tests for ovarian cancer, doctors highly recommend that women with BRCA mutations have their ovaries removed. She left me feeling that while I had a difficult road ahead, I was going to get through this. Since I had already read so much, I really just needed her to confirm that I was truly at a very high risk of cancer, that I was lucky to have discovered this before getting sick, and that whatever I decided next, it would be all right. Did I need more information? Time to be alone, or to cry? After she told me the results, she asked me what I needed in that moment. My counselor was sympathetic and knowledgeable. Talking to someone about the results versus reading them in an online report - even after wading through a long tutorial - was the difference between day and night. But the way I felt was totally different from the way I felt after opening the report from 23andMe. But a few weeks later, I got a call from my genetic counselor. I felt temporarily comforted, and hoped that the new results would prove 23andMe wrong. So she introduced me to a genetic counselor who had me redo the test through a hospital-approved lab. While the company says its reports are 99% accurate, most doctors want confirmation from a second source. “We always encourage customers to have the results confirmed in a clinical setting where they can engage in conversation with a health care provider.”Īt Cedars-Sinai, my doctor said I shouldn’t make any decisions based on the 23andMe test.
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“We recognize that people will have different responses to the information presented,” says Altovise Ewing, who works at 23andMe as a medical science liaison. I hate to admit it, but I clicked through that tutorial without paying it too much attention. 23andMe replaces that one-on-one conversation with a digital tutorial that every user must go through before she or he can view results for any of the reports the company deems sensitive (such as tests for BRCA or Parkinson’s disease). There will be countless other women who, like me, are going to find out about their increased risk of breast cancer through an online report as opposed to sitting with a genetic counselor, which is how people find out when they do genetic testing through a health care professional.
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Not only was I wrong, but I got the news in the worst way possible: online. And in the back of my mind I figured it would show that I wasn’t at risk of some of the terrible diseases on the health list. I opted into the health screening portion of the report because I figured if I was taking the test, I might as well get as much information as possible. With the increasing popularity of 23andMe, and other companies like it, I won’t be the last.Ģ3andMe started offering screening for BRCA1 and BRCA2 mutations in March of 2018, three months before I took my test. I’m not the first person to get surprising and terrible news from an at-home genetic testing company. Instead, she sent me to a breast doctor at Cedars-Sinai in Los Angeles. I was sure she’d say something comforting about how the odds were bad but I, personally, wasn’t going to get cancer. My husband wisely suggested I step away from the computer and call my gynecologist. A BRCA1 mutation is a deeply terrifying diagnosis.Īfter 20 minutes of Googling, I felt like I couldn’t breathe anymore. In the rest of the population, a woman’s lifetime chance of developing breast cancer is about 12% and her chance of getting ovarian cancer is 1.3%. I learned that 72% of women with a BRCA1 mutation develop breast cancer and 44% end up with ovarian cancer. The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades Exclusive analysis of biotech, pharma, and the life sciences Learn More