The so-called Angelina Jolie effect not only is real but has been “global and long lasting,” leading to a twofold increase in the number of women getting genetic testing to help determine their risk for hereditary breast cancer, according to new studies from the United Kingdom and Canada. The number of women found to have a genetic mutation that increased their risk also has doubled.
And contrary to concerns that women at low risk for hereditary breast cancer would flood testing centers, researchers said that those being tested are women like Jolie who have a family history of breast cancer or who have personal risk factors such as ethnicity. Certain ethnic groups, including Ashkenazi Jews, have a higher prevalence of BCRA mutations, which significantly increase breast cancer risk.
“What surprised us was that we didn’t get the worried well,” said Dr. Andrea Eisen, head of preventive oncology for breast cancer care at the Sunnybrook Odette Cancer Centre in Toronto and an author of the Canadian study, in a phone interview. “We got women who got the correct message. That was gratifying.”
Jolie disclosed in a May 2013 op-ed in The New York Times that she had undergone a preventive double mastectomy after finding that she carries the rare BRCA1 gene mutation, which dramatically raises her risk of breast and ovarian cancers. The Oscar-winning actress has an extensive family history of both cancers; she lost her mother to ovarian cancer and an aunt to breast cancer. Jolie urged other women — especially those with family or personal risk factors — to “seek out the information and medical experts who can help you … make your own informed choices.”
An uptick in people seeking health services after a celebrity awareness campaign is not unusual, and doctors and genetic counselors in the United States and elsewhere spoke of seeing a greater interest in genetic counseling immediately following Jolie’s much-publicized announcement. But the two studies are the first to confirm and measure the effect as well as how long it has lasted.
“Having women with strong family histories seeking counseling and education and in many cases, surgery, based on having the role modeling of Angelina Jolie can be very helpful,” said Dr. Robyn Andersen, a member of the Fred Hutchinson Cancer Research Center’s Public Health Sciences Division whose work focuses on ovarian cancer. “A lot of people thought that once genetic counseling and testing were viable, the majority of the high-risk population would seek that counseling. But it’s been over 10 years, and a substantial majority of them have not sought genetic counseling.”
In their study presented earlier this month at the American Society of Clinical Oncology Breast Cancer Symposium in San Francisco, Eisen’s group reported that in the six months following Jolie’s revelation, twice as many people were tested for BRCA1 and BRCA2 mutations at Toronto’s Odette Cancer Centre — 437 compared with 213 in the previous six months. Of those tested, 61 people, or 7 percent, were found to carry the BRCA1 or BRCA2 mutations compared to 29, or 6 percent, before. The proportion of people found to be carriers remained constant — another confirmation, researchers said, that Jolie’s message reached those most at risk.
A larger study based on data from 21 centers in England and Wales, published todayQuan’A in the journal Breast Cancer Research, found very similar numbers. Following Jolie’s May announcement, referrals for genetic counseling more than doubled for the first two months, then doubled through October compared to the same period the previous year. The numbers have waned somewhat since then but remained 32 percent higher through January, when the study stopped. Researchers led by Dr. Gareth Evens of Genesis Breast Cancer Prevention and St. Mary’s Hospital in Manchester, England, also found no evidence that the publicity surrounding Jolie resulted in low-risk women being referred for testing.
The increased numbers of high-risk women being tested signaled that, before Jolie’s announcement, many people must have been either unaware of the relevance of their family history or hiding concerns, the researchers wrote.
Even if they don’t seek genetic counseling, many women with a family history of breast cancer realize they are at risk and take steps to protect themselves by getting regular mammograms, said the Hutch’s Andersen, who was not involved in either study. But what they don’t realize is that genetic counseling would also be able to tell them their risk of ovarian cancer, which is much harder to detect.
“Some may be doing the right things for breast cancer, but the other thing they can learn at counseling is their ovarian cancer risk,” she said. A woman could discuss with a genetic counselor steps that could be taken to reduce that risk, such as including long-term use of contraceptives, certain blood screenings or ultrasound, or surgical removal of the fallopian tubes or ovaries. In her New York Times op-ed, Jolie hinted that she may have future surgery to remove her ovaries.
Most breast cancers are not hereditary. The National Cancer Institute estimates no more than 10 percent of all breast cancers are due to inherited genetic mutations such as BRCA1 or BRCA2, among others. According to the NCI, about 12 percent of all U.S. women will develop breast cancer and about 1.4 percent will develop ovarian cancer.
For women (and men) with a BRCA gene mutation, however, the risks are much higher. These risks vary depending on family history and other factors, but around 55 to 65 percent of BRCA1 women and around 45 percent of BRCA2 women will be diagnosed with breast cancer by age 70. And nearly 40 percent of BRCA1 women and 11 to 17 percent of BRCA2 women will develop ovarian cancer. Jolie wrote that her doctors estimated that she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.
Although no published studies have quantified the Jolie effect in the U.S., health care providers report heightened awareness.
“We have lots of interest and long waiting lists for our breast and ovarian cancer prevention center,” said Dr. Julie Gralow, a Fred Hutch solid tumor researcher and director of Breast Medical Oncology at Seattle Cancer Care Alliance, Fred Hutch’s cancer treatment arm.
And the Jolie effect is not just apparent in the English-speaking world. During a trip in June to Gaungzhou, China, Gralow was to deliver a talk to a group of young women. She was told to expect a large crowd because everyone knew about Angelina Jolie. So Gralow added slide of Jolie to her presentation.
“It totally connected to a Chinese audience,” Gralow said. “She transcends nationalities and populations. She’s created awareness around the whole world.”
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Solid tumors, such as those of the breast and ovary, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine, and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.