Some women who’ve been diagnosed with early-stage breast cancer in one breast choose to have that breast and the other healthy breast removed -- a double mastectomy. Removing the other healthy breast is called contralateral prophylactic mastectomy.
The healthy breast usually is removed because of an understandable fear that a new, second breast cancer might develop in that breast. More and more women who’ve been diagnosed are opting for contralateral prophylactic mastectomy -- in the late 1990s, between 4% and 6% of women who were having mastectomy decided to have the other healthy breast removed. Research published in 2016 found that rates of prophylactic mastectomy more than tripled from 2002 to 2012, even though other studies have shown that removing the other healthy breast doesn’t improve survival.
Doctors have been trying to understand why this increase is happening. A study done by researchers at the University of Michigan suggests that more women are choosing to have prophylactic mastectomy because of media coverage of celebrities with breast cancer.
The study was published online on April 19, 2016 by the Annals of Surgical Oncology. Read the abstract of “Trends in Media Reports of Celebrities’ Breast Cancer Treatment Decisions.”
For the study, the researchers searched online databases of major U.S. print publications for stories on celebrities with breast cancer from 2000 to 2012. During that time, the number of women who had prophylactic mastectomy at the University of Michigan rose nearly five-fold.
The researchers found that 17 celebrities publicly disclosed a breast cancer diagnosis and treatment. Four celebrities had prophylactic mastectomy and 45% of the media coverage mentioned that fact. Ten of the celebrities had a single mastectomy or lumpectomy and 26% of the media coverage mentioned it.
"People underestimate the impact of celebrity news reports on medical knowledge," said study author Michael Sabel, M.D., chief of surgical oncology at the University of Michigan Comprehensive Cancer Center. "It's naïve to think this is not a source from where we get our medical information. Much more often, patients are not coming in asking what their options are for treatment. They are coming in saying they want a bilateral mastectomy. Patients are increasingly using outside sources of information, such as the Internet, and coming to their own conclusion."
When actress Christina Applegate was diagnosed with breast cancer in 2008, a strong family history of the disease and testing positive for a BRCA1 mutation influenced her decision to have prophylactic mastectomy. Still, only a small percentage of the media coverage included these facts.
In 2013, actress Angelina Jolie wrote in the New York Times that she had both breasts removed because she had a BRCA1 mutation and had a much higher than average risk of breast cancer.
"In Angelina Jolie's case, almost every single article explains why she had a bilateral mastectomy. Contrast that to Christina Applegate, who also had a BRCA mutation. That was rarely discussed in media articles," Sabel said.
While many refer to the "Angelina Jolie effect" as influencing the rise in prophylactic mastectomy, it seems to have started earlier than that. Given the timing and the differences in media coverage, Sabel and his co-authors suggest it might be more aptly deemed the "Christina Applegate effect."
It’s common for celebrities to affect the health choices people make. After Jolie’s essay was published, more people asked for genetic testing. After news anchor Katie Couric had a colonoscopy on the Today Show, colonoscopy rates went up. In 1987, after Nancy Reagan decided to have a mastectomy rather than a lumpectomy, lumpectomy rates dropped 20%.
The authors are concerned that women might be choosing prophylactic mastectomy based on inaccurate information about their own personal risks and benefits from the procedure.
"And because they’re coming to their surgeon with their mind made up, there is less opportunity for surgeons to educate," Sabel said. "When the next celebrity has a double mastectomy, we need to make sure we are putting the right messages out. This includes framing the story in terms of why the patient had a bilateral mastectomy and when that might be a good decision for a patient. Reporters need to be aware that their stories could have an impact on what patients are choosing to do."
When you’re first diagnosed with breast cancer, fears about the future can affect how you make decisions. This is especially true for women who have an abnormal breast cancer gene or who have watched a mother or sister be diagnosed with breast cancer. You have to make a number of decisions at a very emotional time when it can be hard to absorb and understand all the new information you’re being given.
At Breastcancer.org, we support every woman’s right to make treatment decisions based on the characteristics of the cancer she’s been diagnosed with, her medical history, her risk of recurrence or a new breast cancer, and her personal preferences. But it’s very important to make sure you understand all the pros and cons of any treatment or procedure you’re considering, including how the treatment or procedure may affect your reconstruction options and if the treatment is likely to make you live longer.
If you’ve been diagnosed with early-stage breast cancer, ask your doctor about ALL of your treatment and risk reduction options. Contralateral prophylactic mastectomy is only one of these options and is an aggressive step. While it may be the right decision for you, give yourself the time you need to consider the decision carefully. It’s a good idea to talk to your doctor about how the details in your pathology report may affect your future risk. You want to be sure that your decisions are based on your actual risk of recurrence or a new cancer. Make sure you understand the benefits and risks of all your options. Together, you and your doctor can make the choices that are best for you and your unique situation.