When Lori Wilson, MD, decided to wean her son from breastfeeding in 2011, something unexpected happened: Only her right breast shrank back to its normal size.
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Being a breast cancer specialist — she's currently the chief of surgical oncology at Howard University Hospital in Washington, D.C. — she decided to get checked out.
"What we found was what I expected to find: that there was a cancer in my left breast," Dr. Wilson tells LIVESTRONG.com. "But what I didn't expect was that I also had a different type of breast cancer in my right breast."
In Dr. Wilson's left breast was invasive lobular carcinoma, a type of breast cancer that starts inside of the lobules of the breast where milk is produced and then spreads, according to the Mayo Clinic. The cancer on that side was also sensitive to estrogen and progesterone hormones in her body.
In the milk ducts of her right breast, Dr. Wilson, who is Black, had an aggressive kind of cancer that is especially common among Black women: triple-negative. That name comes from the fact that this type of breast cancer is not sensitive to estrogen, progesterone or a type of growth-promoting protein known as HER2, according to the Centers for Disease Control and Prevention (CDC).
After treatment with chemotherapy, radiation, surgery and an oral hormonal therapy, Dr. Wilson's cancer was reduced to what she describes as "a tiny amount."
But in January 2019, her back started hurting when she was returning from a vacation. "I thought it was from lifting all the bags and traveling. What I found when I went to the emergency department because of the back pain was actually a recurrence of my breast cancer." Her triple-negative breast cancer had metastasized (or spread).
She went through chemotherapy again, and is now participating in a clinical trial of an experimental treatment while continuing her work at Howard University Hospital. Her work keeps her going, she says, as does her family.
"I have an 8-year-old son, and so for me, I am willing to be very aggressive in my management," she says. "I want to do everything I can to live as long as I can, so that I can be here for my husband and my son."
Why Are Black Women More Likely to Die From Breast Cancer?
Black women's historically lower rate of developing breast cancer rose to a similar rate as that of white women by 2013, as breast cancer death rates fell in both Black and white women, according to an October 2016 report from the CDC. The agency attributes the improvements in part to better screening and early detection.
However, the death rate fell less quickly in Black women, leading to a widening of the gap between Black and white women in breast cancer mortality. Black women were 41 percent more likely than white women to die of breast cancer, according to the CDC report.
There are many reasons why Black women die at a higher rate of breast cancer than white or Hispanic women, experts say.
Triple Negative Cancer Is More Prevalent in Black Women
Most breast cancers have receptors that are sensitive to estrogen, progesterone or HER2, making them easier to target with therapies that can destroy the cancer cells. Because triple-negative breast cancer does not, it is harder to treat with the methods that are currently available.
Compared to many other types of breast cancer, triple-negative grows quickly, is more likely to have spread by the time it's diagnosed and is more likely to come back after treatment. Plus, the outlook for survival is poorer, according to the American Cancer Society (ACS).
Triple negative cancer comprises 8 percent of all breast cancer cases, according to a July 2019 population study published in Cancer, but it's more likely to be diagnosed in women under age 40. Black women are twice as likely as white women to have this type of cancer, and 73 percent more likely than Hispanic women.
Angelique Richardson, MD, PhD, a medical oncologist at UC San Diego Health, sees this trend reflected in the Black patients who visit her practice. They tend to be younger than her white patients and are more likely to have triple-negative breast cancer, says Dr. Richardson, who is Black herself.
"My patients who self-identify as Black have more advanced cancer at the time of coming in to seek medical attention," she says, adding that having a more advanced disease increases their chance of death.
Researchers say future studies should examine the geographic origins of Black women with different types of breast cancer. In a June 2019 study in Cancer, researchers found similar rates of triple-negative breast cancer in Black women born in the U.S., the Caribbean and West Africa, while rates were lower in women born in East Africa. The study authors noted that U.S. and Caribbean-born women share a high degree of ancestry from West Africa, gained through the trans-Atlantic slave trade.
Black Women Are More Likely to Have Other Health Conditions
Black women are 50 percent more likely to have obesity, 60 percent more likely to have high blood pressure and 70 percent more likely to have diabetes than white women, according to the U.S. Department of Health and Human Services' Office of Minority Health.
And those comorbidities increase a Black woman's chances of dying of breast cancer, Dr. Richardson says. "The types of treatment, how you're able to tolerate those treatments — all those things are going to be affected when you come in for treatment," she explains.
Treatment Is Expensive
Black women with breast cancer may be more likely to be uninsured, underinsured or unable to afford breast cancer treatment. This is a problem that Dr. Richardson is seeing more often in her Black patients.
Further, differences in health insurance coverage explains about 37 percent of the excess risk of death in Black women versus white women, according to an October 2017 study in the Journal of Clinical Oncology.
"Lack of insurance is a barrier to receipt of timely and high-quality treatment and screening services," the study authors wrote. Their research also found that almost 23 percent of Black women were uninsured or had Medicaid insurance compared with 8 percent of white women. (In a separate February 2016 Cancer study of breast cancer care quality in New York and California, Medicaid enrollees were found to be less likely to receive recommended care for breast cancer than non-Medicaid patients.)
Black Women Are Less Able to Take Time Off Work
Dr. Richardson points out that many Black women are heads of households who worry that they can't afford to take time off for cancer treatment. An analysis of 2017 Census Bureau data by the Center for American Progress shows that 68 percent of Black women are breadwinners in their households, versus 37 percent of white women.
While finances were less of a concern for Ricki Fairley, staying on her career track was very important. In 2011, Fairley was a partner and chief marketing officer at an Atlanta-based marketing agency and traveling a lot. While on a business trip Fairley got a call from her doctor saying that she had breast cancer and needed to come into the office. "I thought, 'I can't — I don't have time for this,'" Fairley tells LIVESTRONG.com.
After three days of speaking engagements, her doctor called again with the news that she had triple-negative breast cancer. "You need to come home," she remembers her doctor saying.
The Medical Establishment Breeds Mistrust
The historically complicated relationship between Black people and health care systems in the U.S. leaves many Black patients skeptical.
"There have been abuses, unfortunately, in the medical community against Black bodies and our communities," Dr. Richardson says, like the notorious Tuskegee experiment, during which the U.S. Public Health Service studied Black men with syphilis and watched the natural progression of the disease without telling the men they had it or offering treatment. "Mistrust is still there."
She says her approach is to listen to those concerns. Sometimes they may stem from a bad experience that a loved one had with breast cancer. "And then I help them kind of figure out maybe where some of those emotions are coming from."
Sometimes those qualms can push you to find the best doctor for your situation, she adds. "It comes down to finding a provider who you feel comfortable with," she says. "Some people say, 'Well, I don't really have a Black provider in my area.' They may not be a Black provider, but they could still be a provider who you feel listens to you."
What Black Women Can Do to Increase Their Odds of Survival
While the responsibility for closing the breast cancer mortality gap shouldn't fall on the shoulders of Black women alone — health care systems and policy-makers all have a role to play to ensure that Black women have better access to early detection and quality care — there are important steps that Black women can take for themselves.
Talk About Breast Cancer
Knowing your family history may save your life — and telling your relatives about your own breast health may save their lives, Dr. Wilson says. "The difficult thing about breast cancer is that oftentimes we don't share it with our family members, because it may feel as though that's a private issue." Your history with the disease may indicate that they, too, are at risk.
Be open, ask questions and make sure you share anything you learn with your health care providers, including a family history with any type of cancer, she advises. Your primary care doctor can help assess your risk of breast cancer, when you should start being screened and when to refer you to a specialist, if needed.
After treatment with a double mastectomy and breast reconstruction, chemotherapy and radiation, Fairley channeled her marketing talents into just this: Today, she is cofounder and CEO of Touch, The Black Breast Cancer Alliance, an organization that advocates for Black breast cancer survivors and educates Black people about the disease.
Get Assessed and Screened
Dr. Wilson attributes the rising rate of breast cancer incidence in Black women to better education and more screening. In 1987, 23 percent of Black women ages 50 to 74 reported having had a mammogram within the previous two years compared to 32 percent of their white counterparts, according to the National Cancer Institute. By 2018, 74 percent of Black women and 73 percent of white women said the same.
Yet, she says, "We have to make sure that Black women are being screened early." Different organizations recommend beginning regular mammograms at different ages. The U.S. Preventive Services Task Force (USPSTF) recommends that women ages 50 to 74 get a mammogram every other year, while the ACS recommends annual mammograms between the ages of 45 to 54, with mammograms every other year for women over age 55. Younger women should discuss when to start and how often to get screened with their health care provider.
Together, you and your health care provider will assess your family history and other risk factors and determine a screening schedule that's right for you. You should have this conversation before age 40, and maybe earlier, according to January 2018 recommendations in the Journal of the American College of Radiology.
"All women, especially Black women and those of Ashkenazi Jewish descent, should be evaluated for breast cancer risk no later than age 30, so that those at higher risk can be identified and can benefit from supplemental screening," the authors of those guidelines wrote. (Women of Ashkenazi Jewish descent are known to have a higher prevalence of genetic mutations that put them at greater risk for developing breast cancer.)
You may be eligible for free or low-cost mammograms if you are uninsured, your insurance does not cover screenings or your annual income is at or below 250 percent of the federal poverty level. Search for free or low-cost screening sites via the CDC.
Consider Genetic Counseling
"If a woman is diagnosed with breast cancer before age 50, we automatically send all those patients for genetic testing, just because there is a higher likelihood of finding some type of genetic predisposition," says Jane Mendez, MD, a surgical oncologist at Miami Cancer Institute in Miami, Florida.
Genetic mutations can be identified in 5 to 10 percent of all breast cancers, per the Journal of the American College of Radiology guidelines. If a known genetic mutation is found, it increases the chances of finding an effective treatment, Dr. Mendez says.
For women who do not have breast cancer but have a higher-than-normal risk, early detection of a gene mutation can help to determine a course of action that may minimize the chance of developing the disease later.
About 35 percent of triple-negative breast cancers in Black women in the U.S. test positive for mutations in the BRCA1 gene, compared with 10 to 15 percent for this type of cancer in white women, according to the ACS.
Additional genes associated with triple-negative breast cancer include BARD1, BRCA2, PALB2 and RAD51D, according to an August 2018 Journal of the National Cancer Institute study. While the research didn't point to the reasons that Black women are more likely to have this type of cancer, the authors did urge additional study with larger Black populations.
Join a Clinical Trial
The lack of Black women participating in breast cancer clinical trials, whether they examine genes, treatments or another aspect of the disease, is a problem, Dr. Wilson says. She estimates that 5 to 15 percent of breast cancer clinical trial participants are Black (an October 2014 report in Cancer Medicine put it at less than 10 percent).
"Because we are not as involved in research or clinical trials, then we may not have the best possible outcomes, because we're not sure whether different treatments may make a difference in our Black patients," she says.
Fairley thinks it too often comes back to mistrust of being treated as a guinea pig. "A lot of people bring up the fact that they don't want to get the placebo drug," she says, when in fact people in a control group are generally given whatever treatment is the standard of care, to compare it with the treatment being tested.
The National Cancer Institute says placebos are rarely used in cancer clinical trials. If you're curious, take a look at the Institute's guide to cancer clinical trials, including participants' rights, the best types of questions to ask and how to find one you might qualify for.
Gather Support Around You
"As Black women, we don't ask for help," Fairley says. But a breast cancer diagnosis is no time to go it alone.
You may find solace in faith, family, friends or virtual or in-person support groups, such as:
Your health care provider can likely share information about local groups, as well.
Dr. Wilson draws on support from those around her to keep going. "There is life beyond metastatic disease," she says. "There are opportunities that I have been blessed with to turn my disease into a chronic disease, and I am in a really good place right now. I'm surrounded and supported by a great group of clinicians, and I am very lucky to have the opportunity to continue to practice — and hopefully have a voice in the discussion about breast cancer."
Is This an Emergency?
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