MIAMI – Angelina Jolie Pitt, 39, and Kelly Osbourne, 30, may be helping Latinas more than they know. The secrecy of "El Que Dirán" culture in Latin America and the Caribbean may have many in Miami in the dark about their hereditary cancer risk.
The testing to screen for the genetic mutations that Jolie and Osbourne talked about is recommended only for women with a family history. But some Latinas may be underestimating their genetic risk, while dealing with a lack of access to preventive medicine.
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Socioeconomic factors and religion also play a part. While Jews are more likely to have an increased risk, some Latinas may ignore their Jewish ancestry due to a legacy of persecution. And while superstitious ancestors thought of cancer as a spiritual malady, Roman Catholicism taught them breast and ovarian shame.
"I feel at ease with whatever will come, not because I am strong, but because this is a part of life," Jolie Pitt said about choosing to undergo surgery to remove her ovaries in her New York Times op-ed Tuesday. She added that the consequences of awareness and action are "nothing to be feared."
Latinas face many obstacles when it comes to reaching the standard of care that Osbourne and Jolie Pitt encourage. And while ignorance gets in the way of having a preventive strategy, there is also a lack of customized testing for Latinas and resources for unemployed and low-income undocumented women at risk.
The science behind genetic counseling is young. The University of California Berkeley identified the BRCA1 and BRCA2 human genes in 1990. Five years later, U.S. National Institutes of Health scientists discovered that an alteration in this gene affected 1 percent of the Jewish population.
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The cancer risk -- for breast, ovarian and prostate -- was made public in 1997. In 2012, a study revealed that there is a "high prevalence" of the genetic mutation increasing the risk of breast and ovarian cancer among Latinas. Meanwhile, Myriad Genetics' financial interest continues to limit the availability of the testing -- which does not detect all of the mutations that increase cancer risks.
Dr. Jeffrey Weitzel, director of clinical cancer genetics, runs the clinical cancer genetics community research network, which runs throughout the Western hemisphere. He has said several studies have "established unequivocally" that Latinas should undergo a more comprehensive genetic test that screens for "large rearrangement" mutations.
In the case of this breast cancer survivor born in Colombian, by the time I had the knowledge that I was a BRCA mutation carrier, I was a 33-year-old cancer patient. As far as my mom and I knew, I didn't have that history. I had surgery to remove both breasts (bilateral mastectomy) with Dr. Robert Derhagopian at Baptist Hospital in 2011 and robotic surgery to remove ovaries, fallopian tubes, cervix and uterus (a hysterectomy) with Dr. Edward Fidalgo at Mercy Hospital in 2013. I will never be pregnant and breast feed a baby, but I am still alive to dream of adopting one day.
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Aside from revealing that she opted for a second preventive surgery (a laparoscopic bilateral salpingo-oophorectomy and a bilateral mastectomy), she also reminded women that every patient has to consider different treatment options. For instance with breast cancer that is positive for estrogen and progesterone hormones, there is a risk that the hormonal treatments that Jolie referred to could fuel cancer.
"It is not possible to remove all risk, and the fact is I remain prone to cancer," Jolie said in her NYT op-ed. "I will look for natural ways to strengthen my immune system. I feel feminine, and grounded in the choices I am making for myself and my family. I know my children will never have to say 'Mom died of ovarian cancer.'"
What is most amazing about the power of her use of celebrity is that many women -- who like me were faced with having to undergo the life-saving surgeries -- had already looked up to her family as an example of how wonderful adoption can be.
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Osbourne agrees with Jolie on that "knowledge is power." The heavy metal star's daughter said she and her cancer survivor mom, Sharon Osbourne, tested positive for the genetic mutation. She said she plans to take action, after she has children.
"I know that one day I will eventually have to do it too," Osbourne said during "The Talk" Tuesday. "Because if I have children, I want to be there to bring them up. I want to be there to support them in every way I can."
Follow Local10.com reporter Andrea Torres on Twitter @MiamiCrime
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