Embracing the "Angelina Jolie Effect"
Celebrities are celebrated in American culture, and when they talk about cancer prevention, people respond. Such a reaction has been called the "effect" as in the "Katie Couric Effect," after the then Today show host underwent a live televised colonoscopy in 2000. She was promoting colorectal cancer screening in honor of her husband, who died from colon cancer.
But the Katie Couric Effect was controversial. Couric was 43, too young for a routine colonoscopy, and her promotion of screening led to an unprecedented uptick in colonoscopies in the nine months that followed. Much of the screening was appropriate, but some wasn't, says Kenneth Lin, MD, MPH a family medicine physician at Georgetown University School of Medicine who publishes a blog on his Common Sense Family Doctor website. Still, the National Institutes of Health has said there are few strategies to increase screening that are more effective than a celebrity endorsement, Lin says.
Now, there appears to be an "Angelina Jolie Effect," named after the actress who disclosed her decision to have a prophylactic double mastectomy in an op-ed column May 14 in the New York Times. Jolie has a BRCA1 mutation, which increases her lifetime risk of developing breast cancer to 87 percent, and bumps her chance of being diagnosed with ovarian cancer to 50 percent, although there is some uncertainty about the figures.
She explained her reason for going public:
Cancer is still a word that strikes fear into people's hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action. ... I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.
A nationwide 'Jolie effect' did result, as can be seen in the sudden delay in receiving results for tests of BRCA1 and BRCA2 mutations by women who underwent such testing in the few weeks since Jolie's announcement.
"The delay, due to a backlog of tests that need to be analyzed, is unprecedented, which tells me many, many more women have suddenly decided to be tested — and it makes sense that this is because of a Jolie Effect," says Beth Peshkin, MS, CGC, a senior genetic counselor and a professor of oncology at Georgetown Lombardi Comprehensive Cancer Center.
Peshkin's team has also experienced the putative effect in their own practice. Requests for genetic counseling at Georgetown Lombardi more than doubled in the weeks following publication of the column. But the vast majority of those who called had a good reason for doing so, Peshkin says. "I was surprised. I thought the 'worried well' would call — that we would be buried by requests for testing that were not supported by a woman's personal or family history."
Instead, more relatives of individuals who already tested positive for a BRCA1 or BRCA2 mutation phoned. "They knew they had a mutation in the family and they wanted to be tested. Other callers had had breast cancer or a suggestive family history and just hadn't been motivated to contact us before this."
Decisions that are "emotional, yet clear-eyed..."
Peshkin, like other Georgetown Lombardi health care providers who work as a team with women at increased risk of breast cancer, understand and empathize with the difficult position that women with a BRCA mutation, or a family history of breast cancer, face.
They say these women are often emotional, yet clear-eyed, about the decisions they must make. Some women choose to have prophylactic double mastectomy in their 20s or 30s, and will also have an oophorectomy (removal of their ovaries) after they have had their children.
"We are seeing the next generation of BRCA mutation carriers — girls who were teenagers or younger when their mothers were treated for a BRCA-related breast cancer. They know they need to make a difficult decision if they don't want to go through what their moms did," Peshkin says.
She has seen three generations of a family that was affected. The grandmother developed breast cancer, the mother tested positive for a BRCA mutation and had her ovaries removed, and the daughter, in her 20s, sought testing and counseling with Peshkin, and recently had a prophylactic mastectomy. "It was my honor to help these remarkable women," she says.
Other women make an equally difficult "watchful waiting" decision — high-risk surveillance which involves a breast exam three or four times a year, an annual mammogram and MRI tests, says Lyndsay Anderson, MSN, FNP, a nurse practitioner who works in the Betty Lou Ourisman Breast Health Center at MedStar Georgetown University Hospital.
"Young women are also likely to choose surveillance because they just aren't ready for surgery or don't want it," says Anderson. "BRCA mutations are not an absolute guarantee of cancer."
Three of Anderson's high-risk surveillance patients did develop breast cancer last year. "Still, that's a low percentage overall," she says.
Anderson has also seen an uptick in calls that she attributes to the Jolie Effect. "The response I have seen is that women with a strong family history of breast cancer have suddenly decided to be tested," she says.
"I believe Jolie is empowering women to take care of their health," Anderson says. "The decision to test is so stressful for women. It takes courage."
Surgeon Shawna Willey, MD, FACS, a member of the breast cancer program at Georgetown Lombardi and director of the Ourisman Breast Health Center, agrees that the Jolie op-ed had an impact both on the general public and on the women who have chosen to have double prophylactic mastectomy. "If anything, I think this is seen as validation from women who have made the decision to have this serious surgery, and they are gratified that Jolie was so public about it."
Angelina Jolie epitomizes the take-care attitude that women with a BRCA mutation or family history of breast cancer now have, Willey says. "In the old days — BRCA mutations were only discovered in the early 90s — both women and their physicians were more reticent to have the surgery. It was thought to be rash, but we didn't know how to calculate risk and we didn't do much testing."
Now she sees many young women opting for the surgery. "They have seen family members die horrible deaths from breast cancer, and they want to be in control." For example, Willey recently treated a woman who timed her surgery between finishing college and starting a new job.
"We can ask if there is an age that is really too young, but if you face a high certainty of developing a disease, it is up to you to choose the time," Willey says. "These are emotional decisions, but they are made with maturity."
Willey says it is too early to see any increase in scheduled surgeries as a result of the Jolie Effect, but she expects there will be an impact. "And I will applaud each and everyone of these brave, resolute women," she says.
By Renee Twombly, GUMC Communications
July 18, 2013