Cancer research to examine ‘Jolie effect’
The day after actress Angelina Jolie revealed in 2013 that she had both of her breasts removed to prevent cancer, Ottawa surgical oncologist Dr. Angel Arnaout had a “swarm” of people at her clinic “asking, all of a sudden, why they couldn’t get the other side taken off.”
Jolie had the surgery because she carries the BRCA1 gene mutation, which puts her at a 60 to 80 per cent lifetime risk of cancer in both breasts.
But only 15 per cent of women with breast cancer carry such mutations.
And yet, Arnaout was hearing from patients with cancer in one breast and no greater risk than the average person of developing it in a second breast. Suddenly, many women wanted both breasts removed.
“There is no reason to remove the opposite breast and yet they are requesting it and it is happening at an increasing rate,” said Arnaout, a surgical oncologist with The Ottawa Hospital.
The “Jolie effect,” as it has been called, is real and Arnaout says she has talked to many other physicians who have seen the same thing.
But it is just one factor in a worrying — and rising — trend in Ontario: A growing number of women are opting to have a healthy breast removed after a diagnosis of cancer in the other breast, a move that puts them at greater risk of surgical and post-surgical complications that, in some cases, can delay cancer treatment.
Arnaout, who is also affiliated with the University of Ottawa, and Dr. Janet Squires, a behavioural scientist in the clinical epidemiology program at The Ottawa Hospital Research Institute and an assistant professor of nursing at the University of Ottawa, are studying the trend in Canada. They hope to better understand the phenomenon and to develop interventions to reduce the number of unnecessary breast removals. They have received a $100,000 Knowledge to Action Grant from the Canadian Cancer Society, as well as a $99,000 grant from the Ontario Institute for Cancer Research.
The research is particularly crucial in Ontario, where the number of women opting for a double mastectomy when one breast was healthy spiked by 110 per cent between 2002 and 2010 — prior to the Angelina effect coming into play — and anecdotal evidence suggests the trend may have worsened since then.
The researchers will look at the factors leading to those unnecessary surgeries by interviewing patients and doctors, including surgical oncologists, plastic surgeons and medical and radiation oncologists. And they will develop strategies including better education and information about the risks and side-effects of prophylactic mastectomies for patients and changing behaviours of some health professionals.
“Our culture, the media and emotions after a breast cancer diagnosis can all be factors in women’s choice to have their healthy breast removed,” Squires said.
The researchers are working with patients, including one woman who asked for a double mastectomy, but changed her mind after talking with her doctor.
“I lived in fear for so long not knowing just how low my chances of recurrence were. I hope my experience will save women from making any rash decisions without being properly informed,” said the woman, identified only as Tammy.
“What we are trying to promote is allowing our breast cancer patients to go through treatment with the least amount of complications and the most amount of survival,” said Arnaout. “And we need to correct the false perception that removing the opposite normal breast or having more surgery is going to help them live longer.
“I don’t think people understand that what they are worried about has nothing to do with removing a normal breast.”