Angelina Jolie’s personal Cancer risk calculator: What’s yours?

The internet is abuzz these last few days with news that Angelina Jolie underwent a double mastectomy as a preventative measure against breast cancer. Angelina noted that her mother died of ovarian cancer at a very early age, thus denying her the chance to meet some of her grandchildren.  Angelina, as a result, underwent genetic testing and was advised that she had a genetic mutation–about one in 500 women have a mutation in genes called BRCA1 or BRCA2.  With such a genetic mutation and family history, Angelina Jolie made a tough choice. She decided to undergo a double mastectomy in order to severely reduce her chances of getting breast cancer.

This genetic mutation leads many women to feel stigmatized, feeling they are abnormal, dirty, or defective. For that reason, many women do not want to get genetic testing (well, there is also the cost–genetic testing can cost more than $4000, and isn’t always covered by insurance). Going through genetic testing can lead many to feel that they were just moments away from turning into a monster. That, in part, is referred to in the social psychological literature as latent stigmatization.  Conflicting data on the value of mammograms and potential stigma leads us to the question of what impact Angelina Jolie’s revelation might have.

Note that while routine mammograms have been recommended by the American Cancer Society for women over age 40, a new task force recommends mammography every two years for women ages 50 to 74 years old. Why that discrepancy? Let me take a step back and present the latest data. A recent study (2012) published in the New England Journal of Medicine suggested women receive too many mammograms, thus increasing their likelihood for misdiagnosis and unnecessary treatments. The study analyzed 30 years of U.S. government data and found that nearly one in three patients (1.3 million women), whose cancer was found through routine mammograms were treated for tumors that were not necessarily life threatening. Current guidelines say screening should occur every two years for women over 50, but the new study warns early detection can lead to over-analyzing. So, there are problems with over-analyzing and problems with under-screening. How can we get it right? How do we get it right for communities that are on the margins and may already be disproportionately impacted by cancer?  How do we get it right for ourselves, for our Hispanic brothers and sisters?

What does preventive care look like? Did you know that cancer has overtaken heart disease as the leading cause of death among Hispanics (American Cancer Society)? For Hispanic women, preventative breast cancer care is often neglected, leading to much later diagnoses and higher mortality rates. Also, both Hispanic men and women are twice as likely to have, and to die from, liver cancer, and Hispanic women are twice as likely to have cervical cancer, and 1.5 times more likely to die from cervical cancer as compared to non-Hispanic White women.

Angelina Jolie highlighted the notion of personal risk.  Many of us have to calculate that with whatever information and means we have available. A recent study (Ramirez,et al.,  2013) found that when Latinas get an abnormal mammogram, it takes more than 30 days longer than white women to get a breast cancer diagnosis.  That is a period of anxiety that can impact whether the person ends up accessing care later on or what kind of medical decisions they make in light of a diagnosis. In a recent study in the journal Cancer (Ramirez, et al., 2013) researchers found that assigning a “patient navigator” to Latinas who have abnormal breast cancer scans improves their health care. Women in the study (Ramirez, et al., 2013) tended to receive a diagnosis more than 40 days sooner if they worked with a patient navigator. But note that even with an early diagnosis, Latinas are more likely to have tumors that are larger and harder to treat than white women (http://womenshealth.gov/minority-health/latinas/breast-cancer.cfm). They also seem to get breast cancer at a younger age. There is not much research out there that can illuminate why these differences occur. Obviously, there is a need for more research to better understand these and other differences. There is also a need to get communities to advocate for themselves to be included in these research studies, so that they can benefit from medical advances.  For Latinas, especially those with limited access to cancer screening, community-wide  education on healthy lifestyles (i.e exercise, nutrition, smoking cessation) can can help empower women further.

Part of that education can occur in moments like these where an A-list, glamorous movie star brings cancer awareness to the forefront. The number of Latino moviegoers in 2012 increased by 12% and Latinos accounted for 25% of all movies seen, even though they are 18% of the movie-going population (Nielsen, 2013).  Apparently, in Hollywood it is widely known that the secret to saving the movie theater and corresponding film industry is to reach out to Latinos who keep going to the movies and buying movie tickets.

Perhaps, the favor can be returned whereby personal stories by such a movie star can lead to enhanced awareness on the part of Latinas and that they will now learn a bit more about Cancer and the notion of personal risk and prevention.

by Miriam Y. Vega, PhD @miriamyvega (twitter)

If you are reading this posting and are wondering about your own personal risk, here is a tool that can guide you through that: http://www.seattlecca.org/breast-cancer-risk-assessment.cfm

Here is also a brochure: http://www.cancer.org/acs/groups/content/@nho/documents/document/ffhispanicslatinos20092011.pdf

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