Elle Article - Olivia

ELLE BEAUTY Neurotica

Panic Room Misunderstanding breast cancer risk throws some women into unnecessary panic and gives others a false complacency. Rachael Combe sorts out who should be worried

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ing proteins that stop cells from growing abnormally. About 13 percent of American women will be diagnosed with breast cancer at some point in their lifetime, but a BRCA mutation can bump that risk to 40 to 80 percent (and also increase the risk of ovarian cancer, to 20 to 50 percent). But the genetic counselor was not terribly impressed by Olivia’s family history. The strongest hereditary effects are generally found only in first-degree relatives, which means a mother, sister, or daughter. It was only because she was so young that health insurance agreed to pay for the testing. When the results came back negative for a BRCA mutation, we were all relieved, not only for Olivia, but for our kids. Still, the result was more than a little confusing. “I was glad—in a way. It meant I didn’t

have to have my ovaries removed, which was great,” she says. “But in other ways, it left me wondering what in the world was going on. Why did I have it so young?” A survey last fall by the National Breast Cancer Coalition found that 56 percent of women believe that most breast cancers occur among women with a family history or a genetic predisposition to the disease. But in truth, only 5 to 10 percent of breast cancers are believed to be hereditary. The other 90 to 95 percent implicate a hodgepodge of factors, from hormone replacement therapy to age; from weight to plain old bad luck. That’s not the only form of misinformation circulating. Younger women tend to vastly overestimate their risk of breast cancer, while older women underestimate it,

Breast scan: Howard Sochurek/Corbis; woman: Image Source Black/Alamy

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y sister-in-law Olivia was 34 when she found the lump. She discovered it by accident, while adjusting her bra strap. Her aunt Deb—my husband’s mother’s sister—had died of breast cancer at 55, and Olivia had always worried about the disease, believing Deb’s cancer meant she carried a higher than average risk. With her aunt’s swift decline in mind, Olivia went to her doctor the same day. Within three weeks she had a diagnosis: stage-one breast cancer—her worst fear come true. “It was like nuclear winter,” she says of the emotional blow. Three weeks later, she underwent a bilateral mastectomy and began chemo. Her tumor was small and isolated enough that she could have had it removed, conserving the rest of her breast tissue. Studies show that for cancers like my sister-inlaw’s, mastectomy decreases the risk of reoccurrence, but doesn’t necessarily increase the rate of survival. For Olivia, the decision was largely psychological. “I wanted them off,” she says. She had a fouryear-old son, she intended to survive for many years, and she didn’t want to spend that time obsessing about breast cancer. Because of her age and family history, Olivia assumed she must be carrying one of the “breast cancer genes”—mutations in the BRCA1 or BRCA2 genes—that are more common in premenopausal breast cancer patients. Normally functioning BRCA genes help prevent cancer by mak-

ELLE BEAUTY Neurotica says Debbie Saslow, PhD, director of breast and gynecologic cancer for the American Cancer Society, which leaves legions of young women wracked with guilt if they’re not performing monthly breast self-exams (which, by the way, have never been shown to reduce fatalities) and postmenopausal women perhaps too lax about getting their annual mammogram. Saslow blames some of these misperceptions on the media. “It’s much more compelling to read a magazine story about someone who has young kids and was diagnosed with breast cancer,” she says, or about prophylactic mastectomies rather than a story about an older woman with the disease. And she admits that increased awareness “makes it seem like breast cancer is so common, when heart disease is actually the main killer of women.” Poor understanding of personal risk can also interfere with proper screening. Studies have shown that women who initially overestimate their breast cancer risk are actually less likely to get regular mammograms. Part of this may be that when women learn that their actual risk is lower, they don’t think they need screening. “When you ask women in studies, on average they think their breast cancer risk is about 40 percent,” says Angela Fagerlin, PhD, a professor of internal medicine at the University of Michigan Medical School. “So when they find out it’s really only 13 percent, they get this sense of relief.” On the other hand, some women can also become “frozen by anxiety,” she says. “Research shows that when people are really anxious about something it’s hard for them to perform a health behavior. They won’t get screened. They think it’s better not to know.” This is especially the case for people who don’t think they can do anything about a diagnosis, such as those without health insurance who can’t pay for treatment. For women with a more neurotically vigilant psychology (like, uh, myself), overestimation of risk can lead to unnecessary panic. Sharon Rosenbaum Smith, MD, breast surgical oncologist at St. Luke’s-Roosevelt Hospital Center in Manhattan, says she sees a lot of false alarms among young women who are more alert to breast cancer than ever. “Every day I have somebody in my office who’s hysterical, sobbing. They have a little dry skin and they think they have inflammatory breast cancer,” she says. But, she notes, the flip side of this is women like my sister-in-law, whose panic turned out to be warranted. “Most lumps are not cancer, but every lump elle

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needs to be taken seriously,” she says. While Olivia’s cancer was rare (4 percent of breast cancers are found in women under 40), her inability to find a smokinggun cause was not. Most young breast cancer patients do not carry a known genetic mutation. “For Olivia at 34, she had about a 10 percent chance of having a BRCA mutation,” says Judy Garber, MD, MPH, director of cancer risk and prevention at Dana-Farber Cancer Institute in Boston. For a postmenopausal woman, it’s 3 percent. The mutations are most often found in women of Ashkenazi Jewish origin, African-Americans, and Hispanics, but they can be found in all races and ethnicities. And having a second-degree relative such as an aunt or grandmother who had breast cancer doesn’t necessarily increase your chances of carrying a mutation. Saslow said Olivia’s aunt Deb’s breast cancer was probably “irrelevant” to Olivia’s cancer and that the fact that they were both diagnosed is possibly just chance. The BRCA genes are not the only ones involved in hereditary breast cancers. There is an alphabet soup of genes that have been found to slightly increase risk (CHEK2, PTEN, ATM, p53), but these are nowhere near as powerful as the BRCA mutations, and are far rarer. Researchers are also starting to identify mutations that may work in concert with each other (unlike BRCA mutations, which increase risk on their own), but these are more predispositions than actual breast cancer genes. “It seems likely that there are some forms of genes that up the ante a little bit,” Garber says. “If you think about smoking, some people get lung cancer, some get heart disease, and others get nothing, even though they’re all exposed to the same carcinogen. Some of that is related to chance and other lifestyle factors, and some of it is related to genes.” So if family history isn’t the culprit in the vast majority of breast cancers, what is? Age is the biggest factor—77 percent of breast cancers are found in women over 50. As time goes by and our cells duplicate over and over, we have more opportunities for a cancer to grow. Aside from age, “almost all breast cancer is somehow tied to estrogen levels,” Saslow says. Gaining a lot of weight as an adult is a risk factor because fat produces estrogen. Getting your first period young and reaching menopause late also increase risk because they prolong the body’s estrogen exposure. Hormone replacement therapy can increase risk, as can taking birth control pills (slightly), though the effect fades within a few years

of going off the Pill. Drinking alcohol increases risk, possibly because it interferes with estrogen metabolism. And giving birth before 30 —the younger, the better— offers a protective effect against the disease. On the other hand, women who don’t have their first full-term pregnancy until after 35 actually increase their risk of breast cancer over women who’ve never had a child at all, according to the American Cancer Society. Some of these factors are controllable (weight, alcohol consumption). Others are not (age). And nobody in her right mind is going to plan a teen pregnancy to reduce breast cancer risk (“Oh, no, all of life should be planned around breast cancer,” deadpans Garber). One factor you wouldn’t want to change: Being wealthy adds risk. People in richer countries grow up with better nutrition and girls tend to reach puberty earlier. “If you were to talk to Walter Willett [a Harvard epidemiologist], he calls breast cancer the price of progress,” Garber says. (To find out your actual risk, go to www.cancer.gov/bcrisktool.) The best thing you can do to prevent breast cancer is to lead a generally healthy lifestyle, doctors say. Exercise, eat a hearthealthy diet (lots of fruits, vegetables, and whole grains; limit meat), drink moderately (no more than a drink a day for women); don’t smoke, and keep your weight under control. “Don’t do it just to prevent breast cancer,” Saslow says. “Do it to prevent everything: diabetes; heart disease; breast, colon, and lung cancer—to focus on just one is shortsighted.” Further, while most organizations no longer push breast selfexams now that their effectiveness is in doubt, you should be familiar enough with your body that you’d notice a change, such as a lump or dimpling. All women should report anything suspicious to their doctor, and the ACS and National Cancer Institute recommend annual mammography for women over 40 (women with first-degree relatives with the disease should start mammography 10 years before the youngest diagnosis in their family). If you do find a lump, try to remain calm. Most are not cancerous, and even so, most cancers are caught early; in such cases, survival rates are roughly 97 to 98 percent. I’m thrilled to report that Olivia has been cancer-free for four years and is even starting to go for long stretches without thinking about cancer. It used to be if she had a toothache, “I’d be like, ‘I have stagefour mouth cancer,’ ” she says. But then a couple months ago, she pulled her sciatic nerve. “My first thought wasn’t, It’s cancer. I thought, I slept on it wrong. I was so proud of myself.”