What Will It Take to Close the Mortality Gap For Black Women With Breast Cancer?

October is generally the month that “awareness” around breast cancer research peaks, but it’s important to be aware of potentially life-saving screenings and treatments all year long. In general, there’s been overall progress in breast cancer prognosis for many people: Death rates from breast cancer are now down 43 percent, according to the American Cancer Society.

But despite the advances in treatment, Black women are still 40 percent more likely to die from breast cancer than white women, the society states. While the prognosis for breast cancer is typically very good – Black women are often diagnosed at a younger age, at a later stage, and with more aggressive tumors, explained Monique Gary, DO, FACS, a breast cancer oncologist and medical director of the cancer program at Grand View Health in Sellersville, PA, and Touch, The Black Breast Cancer Alliance. The specific culprit of the 40 percent racial disparity in breast cancer diagnoses is called triple-negative breast cancer. “Triple-negative breast cancer still has the highest impact on Black women with respect to mortality rates,” explained Kathie-Ann Joseph, MD, MPH, a breast cancer surgeon at NYU Langone Health.

Breast cancer screening guidelines have recently shifted, and provide guidelines for Black women to think about risk consultations even earlier-something that may be helpful in closing the racial gap in breast cancer prognosis. But that’s only the beginning.

How the System Has Failed to Protect Black Women

Black Americans are disproportionately at risk for certain types of breast cancer that are particularly dangerous, including triple negative breast cancer. “Triple negative breast cancers can be more difficult to treat and more likely to recur, thus increasing the mortality risk from breast cancer as compared to white women,” DaCarla Albright, MD, associate professor of clinical obstetrics and gynecology and associate dean for Student Affairs and Wellness at the University of Pennsylvania Perelman School of Medicine, told POPSUGAR. There are simply fewer treatments for triple negative breast cancer – because this type of tumor doesn’t have estrogen or progesterone receptors, it doesn’t respond to hormone therapy treatments aimed at blocking the growth of cancer cells. Instead, it may require more aggressive treatment, like chemotherapy.

But in order to undergo treatment, you first have to be diagnosed, and that in itself is a challenge. Because younger and younger Black women seem to be getting breast cancer, their concerns might be dismissed by doctors who believe they’re “too young” to have it. Research has also found that Black women tend to have denser breast tissue, which means tumors can be more difficult to spot in a regular mammogram. For this reason, they may require more advanced screenings, such as an ultrasound or MRI. Because these are often not covered by insurance either, this may delay the diagnosis further. Breast density may also increase cancer risk for reasons that aren’t entirely known.

In fact, there’s a lot that’s still unknown about Black people’s risk for breast cancer and the disparities that exist. Black women under 45 have higher incidence of breast cancer than younger white women. Historically, Black women haven’t been offered enough genetic testing, which creates a gap in understanding of their genetic predisposition to cancer or lack thereof, Dr. Gary added.

While there are lifestyle factors that can contribute to breast cancer risk – including lower rates of breastfeeding, which tends to occur in Black communities, per research – there are socioeconomic factors at play, too. These include barriers to accessing top-quality screening, comparable and appropriately aggressive treatment, and reconstructive surgery options, whether they’re physically or financially out of reach. However, “even if you take poverty and access to care out of the equation, there’s still a gap in diagnosis,” Dr. Gary told POPSUGAR. “Black women are diagnosed at a later stage and have a higher mortality. We cannot underemphasize that racism is a public health issue.” She added that while cancer risk can’t be attributed solely to racism, it’s important to note that this is a systemic problem. Systemic racism in healthcare perpetuates inequality, Dr. Gary explained – and many of those biases and microaggressions persist today, often unintentionally, throughout training programs and into practice. Black patients may feel overlooked or fearful of receiving inadequate care. And the heightened sense of danger Black people feel while just going about their lives inflicts stress on the body over time. Stress has been linked to depression, chronic inflammation, and insulin resistance – all of which have been linked to cancer, Dr. Gary said. “That stress from chronic racial injustice creates an unfavorable environment for optimal health.”

When Survival Is an Act of Resistance

Jasmine Souers was just 25 when she started experiencing breast swelling and discharge. Her grandmother had survived breast cancer twice. Yet when Souers initially asked for a screening, the hospital turned her away. (She would later learn that she did, in fact, have no known gene or genetic mutation that put her at increased risk.) Eventually, after a mammogram and ultrasound both came back negative, a primary care physician told Souers that she most likely had an infection, as she was “too young” for breast cancer. She wasn’t – Souers’s ob-gyn sent her to a breast surgeon, who using an MRI, detected multiple tumors across nine centimeters, the largest being a stage I tumor. By then, months had passed since those initial symptoms. It took a bilateral mastectomy, reconstruction, and radiation for Souers to reach the “survivor” stage.

About a year earlier, at the end of 2015, Marissa Thomas’s primary care provider found a lump in her left breast. She and her doctor brushed it off because she had been working out more and thought she could have pulled a muscle. Thomas didn’t have a family history of breast cancer, specifically – though she does have a genetic mutation called Lynch syndrome, which typically predisposes people to colon cancer – so a diagnosis seemed unlikely, given she was only 35. Two weeks later, Thomas felt the lump again and sensed that something was wrong. She had a mammogram, ultrasound, and biopsy within days that confirmed her suspicion: stage II breast cancer. Her treatment involved a lumpectomy, chemotherapy, radiation, and two reconstructive surgeries.

Image Source: Jay Marable PhotographySurvivors Marissa Thomas (left) and Jasmine Souers (right) founded For the Breast of Us, a digital community for women of color at all stages of breast cancer.

Throughout their journeys, Souers and Thomas tried to forge connections on social media with other people going through similar experiences. “Being a young survivor and Black survivor, I have dual citizenship in communities that are very underrepresented and overlooked,” Souers told POPSUGAR. The two women initially connected on Instagram, while living on opposite sides of the country, and finally met in person in 2019 at a Young Survivors Coalition. They founded For the Breast of Us, a digital community for women of color that welcomes people at all stages of breast cancer, from previvors to those with metastatic breast cancer.

There’s been little visibility of Black breast cancer survivors, something Souers and Thomas are working to change through their blog, Twitter page, Instagram community, and private Facebook group, Breast Cancer Baddies. “It’s not that there are not a lot of Black women survivors – there are – it’s just that their stories are not being told,” Thomas said. “In a sense, we are digging up women who have been in the shadows for so long.” The founders explained that the people who interact with For the Breast of Us not only have a supportive coalition of fellow warriors, but also the agency to tell their story in the way they choose.

What Needs to Change to Save Black Lives

Meaningful change will require the medical community to be anti-racist. In her advocacy work, Dr. Gary collaborates with survivors and advocacy groups to help repair the relationship between Black women and the medical establishment. She encourages Black women to participate in clinical trials and research collaboration with physicians in academia, as well as within their communities. Dr. Gary explained that many Black women are more likely to seek care at a community hospital rather than a large cancer center, where they might not feel as welcome or may not trust that their insurance will be taken. It’s essential then that care, including clinical trials for more aggressive cancers, be offered to them either at local hospitals or at larger hospitals, with transportation provided.

It’s equally important that Black patients be offered the same consultations as white patients – something that will require doctors to fight against their own biases. Research shows that Black women are less likely to have reconstructive surgery after a lumpectomy or mastectomy, often because it’s assumed they won’t have access to a plastic surgeon or that their insurance won’t cover it. Souers and Thomas explained that this is also where spaces like For the Breast of Us can play a role, by educating people who have just received a breast cancer diagnosis about the latest developments in treatment options or how to find oncologists or surgeons who are also people of color.

Research is also key to better understanding and treating Black breast cancer – but that means Black people need to be better represented in breast cancer research. “Ideally, the goal would be to increase studies with representative samples, but due to how issues of race have historically led to poor treatment of Black people or inappropriate types of research, there may be distrust when it comes to participation in research studies,” Dr. Albright said. That distrust is founded, and it’s work like that of Dr. Gary and Dr. Albright that can help Black women gain trust in the medical system.

Image Source: Monique Gary In her advocacy work, Dr. Monique Gary attempts to repair the relationship between Black women and the medical establishment.

Of course, prevention and early detection are just as essential in tackling these disparities. While there are programs aimed at expanding screening, doctors should also discuss risk factors and preventative measures with their Black patients.

Guidelines for breast cancer screening have been updated as of May 2023: The U.S. Preventative Services Task Force now recommends people with an average level of risk to begin regular screening for breast cancer every other year at age 40. “I do think they can go a step further by recommending annual screening, rather than biennial screening, and that women’s primary care provider or ob-gyn perform early risk assessments for women, as high-risk women may need to undergo screening earlier than 40,” Dr. Joseph says. (High-risk, according to the task force guidelines, includes a personal history of breast cancer or high-risk lesions on a previous biopsy, having specific breast cancer genes, or having high-dose radiation on the chest at a young age.)

Dr. Joseph considers Black patients high-risk as well, and she co-authored a 2022 paper in the journal Annals of Surgical Oncology recommending even earlier screenings for Black women before the new mammogram guidelines came out. The authors suggest that Black women go for a risk assessment for breast cancer with a healthcare provider or breast specialist by age 25 to determine potential genetic factors and how early they should start mammograms based on their risk.

Dr. Albright also talks to Black women about their increased risk for triple negative cancers, which could occur earlier. She encourages them to get to know their breast tissue through regular breast self-exams. “I emphasize the importance of breast self-awareness so women can tell if something is out of the ordinary,” Dr. Albright told POPSUGAR. If there’s enough of a focus on properly educating Black women on their risk factors and the steps they can take to protect themselves, it could lead to earlier diagnoses.

Ultimately, a month dedicated to raising consciousness about breast cancer is important, of course, but taking consistent action to make sure Black people are represented, advocated for, and accommodated is the only way to safeguard their health. “We’ve spent a lot of money on breast cancer ‘awareness,’ but Black women have been dying in plain sight for years,” Souers said. Changing that is long overdue.