For more than two decades, cancer death rates in the U.S. have declined steadily among women, due in part to increased awareness and early detection. But for Black women — who still die from the disease at far higher rates than white women — that progress remains out of reach.
That’s because one of the most powerful barriers to surviving breast cancer isn’t ignorance or access to care. It’s fear.
That’s the main finding of a new survey from Word In Black’s Insights & Research Division that delves into Black women’s thoughts and attitudes about breast cancer. It found that around 6 in 10 respondents avoid routine breast cancer screening because they are worried about what the results might reveal — even though roughly two-thirds of respondents either had been diagnosed with breast cancer themselves or knew someone close to them who had been diagnosed.
The findings underpin the report, “Understanding Breast Cancer Risks, Concerns, and Barriers to Screening in Black Women,” by Dr. Christa Mahlobo, director of the division. The analysis identifies fear as the primary obstacle to early detection. But it also found that Black women confront persistent, systemic barriers to breast cancer screening, detection, and treatment. That includes costs, distrust of the health care system, and providers who don’t raise the topic.
The survey’s result, Mahlobo says, “suggests there are many women who may not even want to have the conversation — who may not want to go to the doctor, not want to ask questions, not even want to know what the symptoms are.”
Fear Informed by Experience
Dr. Laura McCullough, co-principal investigator for the American Cancer Society’s VOICES of Black Women study, says the Word In Black report shows the anxiety about breast cancer screening doesn’t occur in a vacuum.
“For many Black women, fear is shaped by lived and historical experiences, including knowledge of worse outcomes in their communities,” she says. “So, it’s fear informed by context, not simply fear of a test.”
The most commonly diagnosed cancer in Black women, breast cancer was the leading cause of cancer deaths among Black women in 2022. Research shows that approximately one in nine Black women will receive the diagnosis in their lifetime, and Black women are more likely to face it at a younger age than white women.
The survey, conducted late last year, asked nearly 1,000 Black women about their knowledge of breast cancer risk factors. It also examined respondents’ experiences with pursuing breast cancer screening and their opinions about other factors that affect breast cancer. Though the survey drew on Black women from different income and education levels, roughly 59% of respondents earned $75,000 or more, and a significant number of respondents had earned at least a bachelor’s degree.
Mahlobo, a research scientist who works independently from Word In Black’s newsroom, says the survey “did ask demographic questions — age, region, income, education,” taking respondents’ age and Census region into account to reflect the national distribution.
The project’s goals were simple, she says: ask Black women what they know about breast cancer, learn about their experiences, and find out what they believe.
The study “didn’t particularly go into the state of medicine,” she says. “But we did get into the psyche of Black women around breast cancer.”
Communication With Health Care Providers
Aside from the fear factor, one of the most striking findings of the survey has to do with communication, or lack thereof, between Black women and their health care providers.
Studies indicate that better-educated, higher-income people tend to receive better care. Despite the substantial percentages of women with middle-class incomes and college education, nearly three-quarters of all respondents said that their health care provider had not discussed genetic counseling or testing for breast cancer.
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This is an important finding given that Black women are disproportionately more likely to suffer from aggressive breast cancers linked to gene mutations, and those mutations tend to be hereditary. Commonly called triple-negative breast cancer, this form of the disease doesn’t respond to hormonal treatments and can be deadlier.
Dr. Kimberly Beavers, a professor at New York University Grossman School of Medicine and a diagnostic radiologist, says the disconnect with their doctors underscores the need for Black women to take the initiative.
“This makes it all the more important that Black women begin screening mammography at age 40 and go every year,” says Beavers, who also practices in Winter Park, Florida. “It is also recommended that all women undergo risk assessment with their doctor by age 25 to understand if they need any supplemental screening prior to age 40.”
Economic Barriers
The survey also revealed that breast cancer screening for Black women can be an economic issue: roughly 20% of respondents cited having difficulty taking time off from work to get examined.
McCullough, the American Cancer Society researcher, says losing time on the job is a strong disincentive to simply getting tested, let alone managing the time and cost of treatment if a woman receives a positive diagnosis.
Screening “is not just a health behavior; it’s an economic decision that for many women means [losing] wages, risking job security, or arranging dependent care,” she says. “Strategies that can help may include extended clinic hours, work-based screening partnerships, mobile mammography services, employer education around cancer prevention, and workplace policies that support preventive care.”
System-Level Failures
At the same time, around 3 in 10 respondents said they didn’t know where to get breast cancer screening. McCullough says that lack of information is ‘not simply a knowledge gap. It is a navigation gap created by a complicated [health care] system.”
If nearly a third of Black women don’t know how to get screened, she says, “that signals a systems failure in communication and accessibility.”
One positive finding: about 64% of all survey respondents said their health care providers had discussed getting a mammogram, a primary tool for detecting breast cancer. Among respondents ages 35 to 54, about 9 in 10 said they had received suggestions to get a mammogram.
Mahlobo says that among respondents ages 55 and over, “nearly 100% said yes.”
The Best Antidote to Fear
While a high percentage of Black women are hesitant to get tested, Beavers says there’s an antidote to fear: knowledge.
Educating patients “is one of the best ways to fight fear,” she says, pointing to anxiety about pain and mammograms. Though a mammogram can be uncomfortable, Beavers says, there is always a technologist on hand with whom a patient can communicate to ensure the best possible experience.”
McCullough agrees, adding that the health care system needs “strategies that build trust, access, and agency” for Black women. The American Cancer Society, she says, has modeled that behavior “through community-engaged navigation, peer testimonials and survivor visibility, and clear follow-up pathways.”
“When systems reduce ambiguity and increase trust, fear becomes more manageable,” she says.
Messaging, Risk Awareness, and a Path Forward
The report underscores the need for culturally responsive care, improved communication and proactive steps toward breast health and early detection.
One surprising finding: just 6% of women were aware of links between obesity and breast cancer risk, particularly after menopause. But Mahlobo points out that increased physical activity is linked to lower breast cancer risk.
“It’s not just about BMI — it’s also about physical activity levels,” she says.
McCullough says health insurers and health care providers can spread the word about screening to Black women through reminder systems, including text messages, combined with awareness campaigns “with clear, simple messaging.”
That, she says, includes partnering with community organizations, faith-based institutions, public health services, safety-net clinics and federally-funded programs.
The objective, McCullough says, is “meeting women where they are.”
What the Word In Black survey findings show is that “barriers to screening are rarely about indifference. They’re about fear, time, cost, and navigation — all of which are shaped by how our health care system is structured,” McCullough says. “If we want to reduce disparities in breast cancer outcomes, we must design systems that make screening simple, trusted, and accessible.”
For her part, Mahlobo is optimistic.
“Breast cancer incidence numbers have been on a decline since 1989, with ebbs and flows. There’s been an increase in early detection and improved mammogram screening ability,” she says. “That gives me hope that we could see a large reduction in breast cancer mortality rates in black women as well.”