It’s been more than two weeks since actress Angelina Jolie revealed the bombshell story of her preventive double mastectomy, and I’m still trying to wrap my head around the implications.
This was a news item that was hard to miss, given the reaction and commentary it ignited. For those who’ve been out of the loop, here’s the story in a nutshell: Jolie went public with a New York Times essay on May 14, telling her story of recently undergoing a double mastectomy to lower her risk of developing breast cancer. Her mother died at age 56 of ovarian cancer and Jolie herself has the BRCA1 gene, heightening her chances of someday being diagnosed with breast and/or ovarian cancer.
“Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could,” Jolie wrote.
She explained that although the decision wasn’t easy, “I feel empowered that I made a strong choice that in no way diminishes my femininity.”
It’s a compelling personal story but the ensuing reactions made it clear there was much more to it than one woman’s choice. After a lot of reading, I saw these main issues that kept rising to the surface:
1. Genetic testing – helpful or not? Jolie urged women to get tested for the BRCA gene, especially if there’s a family history of breast and/or ovarian cancer. What’s left unsaid is that only about 1 percent of women in the U.S. have the BRCA1 or BRCA2 gene. To be sure, genetic testing could help these women weigh their options, but it may not be useful to the population as a whole. For women who test negative for the gene, it might even create a false sense of security, since the vast majority of breast and ovarian cancers are not tied to any obvious risk factors.
Nor is it enough to simply have access to genetic information; people also need guidance to help them make sense of the information and make decisions based on their own values and tolerance of risk.
2. Risk isn’t always perceived accurately. By undergoing a preventive mastectomy, Jolie was able to lower her risk of breast cancer from 87 percent to under 5 percent. But these numbers seem to mostly reflect the odds ratio, i.e. overall likelihood given a specific set of circumstances. They don’t necessarily indicate actual risk. Moreover, even a drastic measure such as a preventive bilateral mastectomy does not lower the risk to zero, nor does it lower the risk of developing other types of cancer.
3. Be careful of the anecdote. Personal stories resonate with people. Jolie put a human face on the ordeal of learning you have the BRCA gene and pre-emptively having both breasts removed. But this is one person’s story; the experience may be quite different for someone else.
Jolie writes that her surgery and breast reconstruction were complication-free. “The results can be beautiful,” she says. No doubt this is the case for some people but it glosses over the possibility of scarring, infection, repeat surgeries and all the other things that can make these procedures anything but beautiful.
4. Surgery to remove healthy body parts, even when heightened risk is present, is a drastic measure. Maybe this speaks to how Americans have been conditioned to fear breast cancer. Some of this fear may be justified. In spite of massive investment in research, treatment options remain limited for metastatic, or widespread, breast cancer. The fact remains, however, that it’s a very aggressive way to try to prevent disease.
Interestingly, studies going back at least a decade indicate that most women who undergo a preventive mastectomy are happy with their decision and feel less anxious about their risk for cancer. Unfortunately some of the public discussion about Jolie’s story has become muddled over the distinction between preventive mastectomy and mastectomy once cancer is diagnosed. These are two different things that cannot accurately be weighed on the same scale.
5. Individual medical decisions are exactly that – individual choices. I wouldn’t judge Angelina Jolie for her choice. Only she can determine what level of risk she’s willing to live with and what she’s willing to do to reduce that risk. For someone else, the decision might be entirely different.
The crux seems to be whether patients have accurate, realistic information and a good understanding of their personal values and preferences – a principal that applies in countless other health decisions, from whether to take a prescription drug to making end-of-life decisions. Maybe by sharing her story, Jolie has contributed to moving along a complicated conversation that needs to happen.