May 20, 2013 | 7
After learning that she had inherited a mutation on one of the so-called breast cancer genes, actress Angelina Jolie decided to have a double mastectomy to reduce her risk of developing breast cancer. She also plans to have her ovaries removed to reduce her risk of ovarian cancer. It may sound like a drastic measure, but mutations on the breast cancer genes (BRCA1 and BRCA2) increase the overall risk of developing several cancers, including prostate, pancreatic, testicular, ovarian, and breast. On average, a woman with a BRCA1 mutation (the one Jolie has) has a 65 percent risk of developing breast cancer and a 39 percent risk of ovarian cancer by the age of 70. Jolie’s mother died of ovarian cancer at age 56, after ten years of living with the disease. Jolie explained her medical decision in an op-ed in The New York Times, saying that she decided to be proactive and to minimize the risk as much [she] could.
Since the Angelina Jolie story broke, there’s been a flurry of discussion about risks, medical interventions, access to medical care, body image, genetics and gene patents, reconstructive surgeries, and of course, health literacy and the role of celebrities in disseminating health information. These are useful conversations that I hope will continue. In the meantime, we should remember an important caveat about Angelina Jolie’s situation. Namely, that it doesn’t apply to most women.
Only about 1 in 600 women have variants on the breast cancer genes that are known to increase cancer risk. Women of Ashkenazi Jewish descent are more likely to have BRCA mutations, but overall less than one percent of the U.S. population of women has them — highly significant if you’re in that one percent, but not so for the vast majority who do not have strong family histories of inherited cancer.
In total, 5 to 10 percent of breast cancer cases, and 10 to 15 percent of ovarian cancer cases, involve mutations on the BRCA genes. Most do not. The interactions between genes and other aspects of the molecular environment are not clear enough to explain why most cases do not involve inherited mutations or why not everyone who inherits mutations in the BRCA genes develops cancer. Though family history of breast or ovarian cancer in a primary relative (such as a mother or sister) may increase a persons’ risk, even these families do not necessarily carry mutations on the BRCA genes. For those with strong family histories that have mutations of unknown significance (and there are many), decision-making about risk-reduction strategies is even more complicated and precarious.
And then there are people like Angelina Jolie — a woman with a mutation on one of the breast cancer genes who does indeed have a higher than average risk of developing breast or ovarian cancer over her lifetime. Since this is a lifetime risk, the younger the woman the lower the risk. At age 40, a woman’s risk of developing breast cancer by the time she turns 50 is 16 percent. Angelina Jolie is only 37.
There is no crystal ball to say when cancer will develop or in whom. Most cancer stems from multiple factors and the complicated ecosystems of our bodies and the external environments that affect them. There are reasonable ways, however, to evaluate one’s cancer risk. For ovarian cancer, known risk factors include age, reproductive factors, inherited genetic mutations, and a strong family history of breast, ovarian, or colon cancer. For breast cancer, risk factors include age, reproductive factors, inherited genetic mutations, postmenopausal obesity, hormone replacement therapy, alcohol consumption, and previous history of cancer of the endometrium, ovary, or colon. Unfortunately, risk factors are more relative than absolute. Seventy percent of those diagnosed with breast cancer have none of the known risk factors (besides being a woman).
As a result, many women overestimate their breast cancer risk, choose double mastectomies when cancer is only detected in one breast and there is no medical reason for doing so, and experience overdiagnosis, overtreatment, and an overabundance of self-surveillance. Genetic testing now blasts into the risk-focused cancer surveillance market with the joyful promise of proactive, empowered, life-saving decision-making — a promise they may help to deliver for people in the one percent. But with more than 1000 mutations already identified in the BRCA genes (and others yet to be discovered), most genetic profiles and treatment options are not so straightforward.
The Commercial Exploitation of Fear, Risk, and Body Image
With nearly 3 million women living with a breast cancer diagnosis in the United States, the advocacy and consumer bases are huge. Pink events in cities across America from pub-crawls to 5-kilometer races call attention to breast cancer, demand media attention, and saturate the culture. The empowerment/awareness context easily commercializes almost every aspect of the disease (i.e., awareness, risk, prevention, diagnosis, treatment, survivorship, research, support — all propped up with a seemingly endless array of pink products and medical interventions.) With 65 thousand new cases of noninvasive carcinoma in situ and more than 232 thousand new cases of invasive breast cancer this year, the breast cancer consumer base continues to grow.
In addition to the use of emotional appeals, breast cancer advertisements increasingly use sex to sell a variety of pinked products. Some of the recent trends include the sexual objectification of women in the name of awareness itself. Femininity and stereotypical beauty ideals easily morph into advertisements for cosmetics and cosmetic surgeries aimed at both the diagnosed and would-be breast cancer supporters. The number of plastic surgery procedures generally increases about 5 percent each year. Ninety-one percent of all procedures are done on women, with breast augmentation topping the list since 2006. Now those in the beauty business can target women in breast cancer awareness campaigns.
The Think Pink Giveaways are not earmarked specifically for women with or without breast cancer. They merely paint a portrait of the ideal woman, perfected through the art of surgery. Incidentally, there was a 22 percent increase in breast reconstruction surgeries (from 79,000 to 96,000 procedures) between 2000 and 2011. Could the point be that, as one breast cancer blogger asks, women’s culturally acceptable body-loathing plays into these choices? One thing for certain is that both the advertisements and the educational materials tend to ignore the postoperative difficulties frequently accompanying these surgeries.
A “Beyond the Shock” educational video from the National Breast Cancer Foundation fails to mention complications in its online guide to understanding breast cancer. In the chapter on reconstruction, there is no discussion of multiple surgeries, pain and weakness, scar tissue, nerve damage, risks of infection and implant rupture, and other complications. The video of a faceless caricature of a woman simply states that, “Following a mastectomy, you have options to help you become comfortable with the changes in your body. They are all options, with benefits to each approach. What is best for you and your body may not be what is best for another woman.”
Sugarcoating or ignoring the risks involved in major surgeries like mastectomy and reconstruction are an affront to women facing life-threatening disease and fear about their futures. Now with news about sexy Angelina Jolie’s “Boob-Job,” as it was referred to in Vibe Weekly, it will take a comprehensive re-education campaign to convey the many complexities such a decision entails, for those already diagnosed with cancer and for those who may have genetic predispositions. Unfortunately, too many cosmetic surgeons and cancer centers have been vigorously posting press releases and advertisements to highlight the positives, rather than offering a complete picture.
The Pink Lotus Breast Center where Angelina Jolie was treated showcased her “Brave Mastectomy Decision” on their website, with a fade-in image of celebrity Sheryl Crow, who, unlike Jolie, was diagnosed with and treated for breast cancer. Looking more like a spa than a cancer center Pink Lotus boasts patient choice, top surgeons, and holistic and complementary services (which may not be covered by insurance plans). After detailing the main stages of Jolie’ treatment in her blog, Dr. Kristi Funk writes, “Like Angelina, I urge women who feel they might have reason to be at risk for a BRCA gene mutation, perhaps because of a strong family history of cancer, to seek medical advice and to take control of their futures.” The uncertain language (e.g., perhaps, might), coupled with the decisiveness of taking control of one’s future is a common advertising formula in a medicalized society. Genetic testing companies similarly advertise the “life-saving, disease-preventing” opportunities of genetic testing even though the benefits for most would be uncertain at best.
The value of preventive measures for people at high risk notwithstanding, risk itself is a valuable commodity. The stock for Myriad Genetics — the company that presently owns the patents on the breast cancer genes and monopolizes the market on BRCA analysis (e.g., trademarked as BRACAnalysis) — went up 3 percent the day of the op-ed to a three-year high with twice the usual trading volume. Myriad markets both to consumers directly and to physicians and other health practitioners. According to Director of the Genetic Counseling Program at the Yale Cancer Center, Ellen Matloff, Myriad has been known to advertise in ways that “mislead [physicians] to think that 10 percent or more of their patients need the [BRACAnalysis] test, when that is not the case.” The Supreme Court will determine in June whether Myriad’s patents on the BRCA genes are indeed legal.
While there is no doubt that people with a strong family history of a cancer linked to the breast cancer genes should have reasonable and affordable access to diagnostic testing, genetic counselors only recommend the tests for those with high-risk profiles:
“Breast cancer before the age of 45, several family members with the disease on the same side of the family, breast cancer and ovarian or pancreatic cancer on the same side of the family, a family history of male breast cancer, or Jewish ancestry combined with even one case of breast or ovarian cancer in the family.”
Most women do not fit high-risk profiles because most cancers do not result from inherited gene mutations. The majority of genetic mutations are acquired over a person’s lifetime (i.e., somatic mutations). This is why the diagnostic tests are only recommended for people with specific risk profiles, and why rampant genetic testing would have little impact on the total cancer burden.
The Angelina Jolie case opens the door for thinking about what is at stake in the cancer wars especially for people at increased risk. Yet Angelina Jolie is in a unique and privileged position. She can get the best care, top surgeons, family help, and everything else that comes with power and wealth. For the rest of us, tough medical decisions come with other costs. But we all deserve quality information, evidence-based medicine, and access to comprehensive and coordinated health care that is free from conflicts of interest and the profit motives of commercial enterprises that are eager take advantage of our fears while selling us superficial “solutions” to our problems.
Courage versus Fear: Keeping Health Risks in Perspective When the Dramatic and Rare Goes Culturally Viral by Hilda Bastian.
Why It Matters That Jolie Wrote About Her Medical Choice by Melanie Tannenbaum.
May We All Have The Option of Double Mastectomy by Hannah Waters.