'Know your risk': Survivors, experts on Black women's challenges in navigating breast cancer
After skin cancer, breast cancer is the most common cancer among women in the U.S. Although deaths from the disease have been declining over the years, thanks to increased awareness and detection and earlier screening, Black women have benefited from this trend far less than white women.
The “mortality gap” between Black and white women is stark, according to the Breast Cancer Research Foundation. Although Black women suffer from slightly lower rates of breast cancer, they are more likely to die from it than white women. Black women are also disproportionately affected by aggressive subtypes of breast cancer and have the lowest survival rates for all subtypes of the disease, according to the American Cancer Society.
To better understand the disparities and what it’s like for Black women navigating breast cancer, Yahoo Life spoke both with medical experts and with survivors.
Black women and breast cancer risk
Many factors, economical and social, biological and behavioral, increase the disparities in breast cancer incidence and outcomes between ethnic groups. “It’s complicated, because who we are is made up of more than where our ancestors came from — both centuries ago and more recently — and the signals that turn cancers on and off can be influenced by environment and social determinants of health,” Monique Gary, an oncologist with a specialty in breast surgery and the medical director of the cancer program at Grand View Health/Penn Cancer Network, tells Yahoo Life. “For too long, we’ve blamed obesity, poverty and cultural indifference in addressing our own prevention. This narrative does not paint a complete picture and ignores important biological considerations that can impact our survival.”
Breast cancer is a blanket term that covers many different subtypes of cancers that begin in the breast. These subtypes also vary among racial and ethnic groups. For example, the triple-negative breast cancer (TNBC) subtype is aggressive, presents at a younger age and has a poorer prognosis, and Black women are at a threefold increased risk of contracting the disease.
Researchers are still trying to understand why women of African ancestry are more likely than others to develop these tumor subtypes. Once they have been diagnosed, they also face disparities in medical care. A 2021 study published in JAMA Oncology found that Black women with triple-negative breast cancer are less likely to receive surgery and chemotherapy.
Black women also have genetic risks to consider. About 5% to 10% of breast cancer cases in the U.S. can be attributed to inherited gene mutations. BRCA1 and BRCA2 are the most common genes linked to a risk of breast cancer. Most people with breast cancer who have a BRCA1 or BRCA2 mutation are diagnosed at a younger age and have more aggressive tumors. While BRCA mutations are rare in the general population, Black women who have undergone genetic testing are found to be more likely to have BRCA1 or BRCA2 mutations than other populations.
At the age of 37, Lyndsay Levingston was diagnosed with stage II triple-negative breast cancer. She shares with Yahoo Life that, “midway through chemo, I received a call from a cousin on the paternal side of my family alerting me about our history. That’s when my doctor recommended a genetic test from Invitae to see if I carried the BRCA1 gene mutation, and my results showed that I did. This completely changed my treatment plan and life.”
After she finished chemotherapy, Levingston says her doctor recommended that she get a bilateral mastectomy “to reduce the recurrence of breast cancer,” as well as “undergo breast reconstruction and remove my ovaries and fallopian tubes to reduce the risk of ovarian cancer, which is substantial, at a 44% to 65% chance over the course of a lifetime, when you carry the BRCA1 mutation.”
The importance of screening for breast cancer in Black women
Given her family history, Jacqueline Beale was keenly aware of her risk of contracting breast cancer. “As a caregiver for my mother, who died from breast cancer, I knew enough to be diligent in performing my monthly breast self-examination,” she tells Yahoo Life.
After completing one of her regular self-exams, Beale felt a small, hard lump in her right breast. “I knew something was wrong, so I went to see my doctor, who agreed something was there,” she says. “After a sonogram and mammogram that returned normal, I had a biopsy that revealed breast cancer.”
Gary emphasizes the importance of practicing breast self-exams regularly and often, especially given the fact that TNBC can occur in young women with no family history of breast cancer. Gary says that breast self-exams should not be a once-a-month occurrence — it’s about learning how your breasts feel at various times of the month, through different hormonal changes.
She also urges patients to get screened for breast cancer if they've put it off during the pandemic. “COVID has significantly impacted our rate of detection, and as a result of these delays, we are seeing more aggressive cancers,” says Gary.
Dr. Toma Omofoye, associate professor in the department of breast imaging at the University of Texas MD Anderson Cancer Center in Houston, cautions, however, that “Breast screening and care are not created equal. While mammography is very effective at detecting existing disease and reducing death from breast cancer, in some women, like those with dense breast tissue, it can be less effective.”
Research shows that Black women are more likely to have dense breast tissue than white women, which by itself is a strong risk factor for breast cancer.
Omofoye says that newer 3D technology, such as digital breast tomosynthesis (DBT), is an add-on to mammography that may be even better at diagnosing breast cancer and reducing false positive callbacks. However, many Black women obtain their screening mammography at facilities that are not equipped with this and other advanced technology. The screening they undergo is suboptimal, with the images are often interpreted at facilities without specialist radiologists. Additionally, women living in rural areas may have little or no access to high-quality breast cancer screening or treatment facilities.
Diagnosis and treatment for Black women with breast cancer
Despite the overall improved survival trends, bolstered by non-Black data, the reality for Black women in the U.S. is that they are about 40% more likely to die from breast cancer than white women with the disease. Experts say several individual and collective factors contribute to this.
From a patient’s perspective, there is some confusion around the recommendations about mammography screening and at what age to start. The United States Preventive Services Task Force recommends that women of ages 50 to 74 who are at average risk for breast cancer get a mammogram every other year. But several health organizations, including the Mayo Clinic, support starting screening at age 40, since that can help to detect breast cancer early.
Since breast cancer in Black women is more likely to occur at a younger age and is more likely to take an aggressive form, waiting until age 50 can mean significant delays in receiving a diagnosis and a greater likelihood at the time of diagnosis that the cancer may have spread. (This is compounded by inequities in access to care and lack of health insurance coverage.) However, a 2021 study published in the Annals of Internal Medicine found that initiating screening 10 years earlier — at age 40 — in Black, rather than white, women reduced Black-white mortality disparities by 57%.
Issues with provider care also play a role in how Black women are diagnosed with and treated for breast cancer. Black women are more likely to experience bias in the health care system that delays diagnosis. “When a young Black woman goes to her provider with a breast concern, she is often told she is too young for breast cancer, and this is not the case,” says Gary.
The same Black woman may be diagnosed late and then, once diagnosed, she is less likely to receive the standard of care. Delays for initial treatment are significantly longer for Black than for non-Hispanic white women after receiving a triple-negative breast cancer diagnosis, and Black women are 48% less likely than non-Hispanic white women to receive guideline-based care for TNBC. Making matters worse, Gary adds that “Black women may not be offered a life-saving clinical trial, and are represented in only approximately 3% of breast cancer clinical trials.”
How Black women can help to increase their chances of survival
There are steps Black women can take to protect their health and become their own health advocates. “Know your risk for breast cancer by age 30,” says Omofoye. “Develop a personalized screening plan,” she adds. “Begin screening mammography no later than age 40, and obtain mammograms every year without skipping.”
Gary also insists that Black women need to know their risk. She encourages using risk calculators to estimate your risk of developing breast cancer, and recommends discussing family history, medical conditions and promoting health literacy in your family and community. “When we know better, we can combat misinformation and antiquated attitudes about clinical trials and medical care,” she says.
If surgery is part of the recommended breast cancer treatment plan, she recommends interviewing more than one surgeon to find the right fit. When Beale was diagnosed with breast cancer, she says, “I interviewed three breast surgeons and selected the one I felt most confident with.”
Gary concurs. She advises that Black women “partner with, but don’t be afraid to challenge, your health care community. Ask questions. Get answers. Bring a loved one or advocate to appointments.”
Gary notes that “your physician might not look like you — Black cancer surgeons and medical doctors comprise less than 2% of the medical community. But we have developed tools to help you to establish trust with your doctors. Know that implicit bias is real and can be addressed from both sides of the exam table.”
Having access to a patient navigator after a breast cancer diagnosis can also help. Ify Nwabwukwu, a registered nurse in Maryland, was diagnosed with Stage 0 ductal carcinoma in situ (DCIS) in November 2016. Ify tells Yahoo Life that, “I had a patient navigator who worked with me most of the time. My experience was smooth, because I have been in the field and knew most of my doctors; every one of them were professional and empathic to my situation. They explained and gave me all my options, and allowed me to make my own decisions.”
Support services for Black women navigating breast cancer
Several organizations support Black women dealing with diagnosis and treatment of breast cancer. Sisters Network, recognized as a critical information resource for Black women, aims to save lives and offer a broad knowledge of the U.S. crisis in Black women's chances of surviving breast cancer.
Many survivors help advocate for those with a cancer diagnosis who are undergoing treatment. Beale says, “I did not survive cancer for me, but I survived cancer for others who are diagnosed and fighting for their lives now." She has since become a national advocate for cancer research and equity, and she served as a member of the Steering Committee for Project TEACH, a program created by Black Women’s Health Imperative (BWHI), Friends of Cancer Research (Friends) and Stand Up To Cancer (SU2C) in 2020. "This nationwide project," she adds, "empowers Black women to engage with researchers and clinicians effectively and to increase the participation of Black women in cancer-focused clinical trials.”
Levingston also leaned into advocacy. “Once I beat cancer,” she says, “I had a clear calling to help others who have to go through this difficult journey, and that’s when I started Survive HER.” She describes it as a platform and community meant to “inform, inspire and empower people around breast cancer awareness.” “We support underserved and uninsured women while they’re going through treatment. We also raise funds to pay for mammography and preventive exams.”
Other resources for Black women navigating breast cancer include the African American Breast Cancer Alliance, Sisters by Choice Inc. and the Smith Center for Healing and the Arts.
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