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Breast Cancer Disparities

Compared with White women, Black women are:
  • more likely to be diagnosed with breast cancer at an earlier age
  • more likely to be diagnosed with aggressive breast cancer
  • more likely to be diagnosed with more advanced stage of breast cancer
  • less likely to receive optimal treatment
  • much more likely to die of breast cancer
Compared with White women, Hispanic women are:
  • more likely to be diagnosed with larger and more difficult to treat tumors
  • more likely to be diagnosed with advanced stages of breast cancer
  • less likely to receive optimal treatment

News

Data on Breast Cancer

W=White 137.6, B=Black 129.6,
NA=Native American 111.3, A=Asian/Pacific Islander 106.9, H=Hispanic 99.9
Source: National Cancer Institute Cancer
Stat Facts: Female Breast Cancer

B=Black 28.0, W=White 19.9,
NA=Native American 17.8, H=Hispanic 13.7, A=Asian/Pacific Islander 11.7 
Source: National Cancer Institute Cancer
Stat Facts: Female Breast Cancer

Women Diagnosed with Breast Cancer

Diahann Carroll

Diahann Carroll, the first Black woman to star in a U.S. television series in a non-servant role, died of breast cancer at age 84 in 2019.

She was diagnosed with a small, non-invasive tumor in her right breast after a routine mammogram in 2007. 

At the urging of friends, Carroll spoke out publicly about her experience and the importance of cancer screening. 

 

Robin Roberts

Television journalist Robin Roberts, 46, was preparing a tribute to a colleague who had died of cancer in 2007 when she did a self breast exam and found a lump.

“This can’t be. I am a young, healty woman,” she thought. 

Roberts was diagnosed with Triple Negative Breast Cancer and underwent successful surgery, chemotherapy, and radiation. 

Naomi Sims

“This beauty was a model, businesswoman, and author— a triple threat. She was the first Black model to appear on the cover of Ladies’ Home Journal in November 1968.”

“She was one of the world’s first Black supermodels, setting the groundwork (and werk!) for so many of us, a true inspiration. My hero.”

Naomi Sims died from breast cancer at age 61 in 2009. From a tribute by television personality and businesswoman Tyra Banks on Instagram.

Since her breast was not painful, rapper Roxanne believed nothing was wrong

When hip hop musician and rapper Roxanne Shante felt a lump on her left breast at age 39, she didn’t immediately panic. “I remember saying to myself like, ‘Okay, I’m getting older. My breast must be falling apart’.” 

None of the women she knew in her family had ever been diagnosed with breast cancer. Since neither the lump nor any other part of her breast was painful, Roxanne believed nothing was wrong.

Later that year during a physical exam, her doctor felt the lump and recommended a mammogram, which found the breast cancer.

Adamari López

When she was 33, Telemundo personality Adamari López was filming telenovelas in Mexico when she felt a lump in one of her breasts and was diagnosed with breast cancer.

“No one had previously had cancer in my familty, so it was difficult and surprising to hear the news.”

López chose to have surgery and chemotherapy and now helps organizations that raise awareness of the importance of early breast cancer detection.

3 Women Under 40 Years Old Diagnosed with Breast Cancer

Kristina Hernandez diagnosed at 24

Maimoh Karmo diagnosed at 32

 

Mona Harris diagnosed at 35

Breast Cancer Disparities

Incidence

Black women. Breast cancer is the most commonly diagnosed cancer among Black women. Similar to the pattern among White women, incidence rates among Black women increased rapidly during much of the 1980s, largely due to increased detection of asymptomatic lesions through newly introduced mammography screening. Recently, increases have slowed and are approaching stabilization in Black women, in contrast to continued increases among White women.

During 2014-2018, the overall breast cancer incidence rate was 127.1 cases per 100,000 in Black women compared to 132.5 in White women, although rates are higher among Black women younger than 40 years of age.

As a result of higher rates among Black women younger than 40 years of age and also because of shorter life expectancy, the median age of diagnosis is younger for Black women, 60 years compared to 64 for White women.

Black breast cancer survivors also have a much higher likelihood of being diagnosed with new cancers because young-onset receptor negative tumors, such as TNBC, are associated with a higher risk of subsequent malignancies than other breast cancer subtypes.

During 2014-2018, the overall breast cancer incidence rate was slightly lower in Black women compared to White women (127 versus 132 per 100,000 cases, respectively). However, it is concerning that, among women who are younger than 40 years, the breast cancer incidence rates are higher among Black women compared to White women. 
Source: American Association for Cancer Research Cancer Disparities Progress Report 2022

Black men. Breast cancer has a higher prevalence among Black men. Overall, Black men have 44-52 percent higher risk of developing breast cancer compared to White men  Black men are also more than twice as likely as White men to develop highly aggressive forms of breast cancer, such as triple negative breast cancer.
Source: American Association for Cancer Research Cancer Disparities Progress Report 2022

Although breast cancer in men is rare, Black men have a higher incidence of all breast cancer subtypes than White men, including a two-fold higher risk of TNBC.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Hispanic women. Breast cancer is the most commonly diagnosed cancer among Hispanic women. The incidence rate increased in Hispanic women from 2006 to 2015 (0.4% annually) while remaining stable in whites. Within the Hispanic population, studies have shown that the risk of breast cancer is even lower in those who are foreign-born.
Source: American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2018-2020.  Atlanta: American Cancer Society, 2018.

Hispanics have a lower rate of breast cancer compared with Whites. Genetic ancestry studies have demonstrated that the risk of breast cancer is lower in Hispanic women if more of their genetic makeup comes from a higher proportion of Indigenous American ancestry, but increases if more of their genetic makeup comes from European ancestry.
Source: American Association for Cancer Research Cancer Disparities Progress Report 2022.

Native Hawaiian women.  Native Hawaiian women had the highest incidence and mortality from breast cancer compared to any other racial or ethnic group in Hawaii.
Source: American Association for Cancer Research Cancer Disparities Progress Report 2022.

Tumor subtypes

Triple Negative Breast Cancer.  Black women are twice as likely as women of other racial and ethnic groups in the US to be diagnosed with triple negative breast cancer (TNBC). Women with TNBC generally have poorer outcomes because of few effective treatments. Nevertheless, Black women are still about 30% more likely to die from these tumors than White women, partly because of lesser rates of surgery and chemotherapy.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Inflammatory Breast Cancer.  Black women are also 72 percent more likely than White women to be diagnosed with inflammatory breast cancer, a rare but aggressive subtype.  Black women are diagnosed with this cancer at an average of four years younger than White women. And Black women die an average of one and one-half years earlier than White women with the disease.
Source:  Incidence and survival of inflammatory breast cancer between 1973 and 2015 in the SEER database (2020).

Reasons for the Black-White variation in subtype distribution remain unclear, but do not appear to be completely explained by the differences in the prevalence of inherited genetic mutations.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Hispanic women. Hispanic women are more likely to be diagnosed with tumors that are larger and are hormone receptor negative, both of which are more difficult to treat.
Source: American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2018-2020.  Atlanta: American Cancer Society, 2018.

Screening

Black women. Black women are less likely than White women to have their imaging performed at a facility with the most current technology, such as digital breast tomosynthesis, and also have a longer time between abnormal results and follow-up.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Stage at diagnosis

Black women. Despite similar self-reported screening prevalence, only 57% of breast cancers in Black women are diagnosed at a local stage compared to 67% in White women. A recent study found that over half of this disparity is due to differences in insurance coverage.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Hispanic women. Breast cancer is less likely to be diagnosed at a local stage in Hispanic women than in non-Hispanic white women, even after accounting for differences in age, socioeconomic status, and method of detection. During 2011-2015, 57% of breast cancers among Hispanic women were diagnosed at a local stage, compared to 65% among non-Hispanic white women. Lower rates of mammography utilization and delayed follow-up of abnormal screening results or self-discovered breast abnormalities among Hispanic women likely contribute to this difference.
Source: American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2018-2020.  Atlanta: American Cancer Society, 2018.

Clinical trials

Black and Hispanic women are under-represented in clinical trials that look at biomarkers which can help identify appropriate personalized treatments. White and Asian women are over-represented in these trials. 
Source: “Racial and Ethnic Disparities Among Participants in Precision Oncology Clinical Studies” by Christopher M. Aldrighetti et al. (November 8, 2021).

Treatment

Hispanic women. Hispanic women are less likely than white women to receive appropriate and timely breast cancer treatment.
Source: American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2018-2020.  Atlanta: American Cancer Society, 2018.

5-year survival

Black women. The overall 5-year relative survival rate for breast cancers diagnosed in 2011-2017 was 82% for Black women compared to 92% for White women, partly due to more advanced stage at diagnosis for Black women.

Black women have lower survival at every stage of disease, largely because of less access to high-quality health care, including receipt of care at low-resourced and/or unaccredited facilities. The greater burden of TNBC in Black women also contributes to disparate outcomes, although research suggests that Black women have lower survival than White women regardless of molecular subtype.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Mortality

Black women. Breast cancer is the leading cause of cancer death among Black women, with an estimated 6,800 deaths expected to occur among Black women in 2022. Improvements in early detection and screening have led to a decrease in mortality for Black women since 1990. However, because the decline began later and was slower compared to White women, this progress led to a widening disparity that peaked in 2011-2012.

From 2010 to 2019, mortality rates continued to decrease in Black and White women by a little over 1% per year; from 1990, the breast cancer death rate dropped by 30% in Black women versus 41% in White women. Breast cancer death rates in the most recent time period (2015-2019) are 41% higher in Black women compared to White women. This racial disparity is largely due to more advanced stage at diagnosis; higher prevalence of obesity, other comorbidities, and unfavorable tumor characteristics, such as TNBC; and less access to high-quality treatment, likely due to financial barriers.

Lack of private insurance and unfavorable tumor characteristics explain one-third and one-fifth of the disparity, respectively among women with early-stage disease younger than 65 years of age. Although there are some differences between Black and White women in the prevalence of genetic variations, they do not appear to explain the survival gap.
Source: American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024.

Hispanic women. Breast cancer is the leading cause of cancer death among Hispanic women. From 2007 to 2016, breast cancer death rates decreased by 1.1% per year among Hispanic women (versus a decline of 1.8% per year among white women). However, declines in Hispanic women younger than 50 years of age appear to have stabilized in recent years.
Source: American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2018-2020.  Atlanta: American Cancer Society, 2018.

More Black Women Die from Breast Cancer Than Any Other Cancer

A diagnosis of breast cancer can be devastating for anyone. It’s even more alarming to know that the color of someone’s skin can be a factor in their survival.

There are many reasons for the disparity: There are challenges in accessing healthcare. Black women are more likely to be living in poverty and be under- or uninsured. There are high levels of medical mistrust, which worsens health outcomes. Systemic racism is being recognized as a determinant of health.

When healthcare professionals understand the barriers that Black women may face in diagnosis and treatment, change can start to happen to improve outcomes for Black women with breast cancer.

Source: “More Black Women Die from Breast Cancer Than Any Other Cancer” by Carly Werner (2022)

Why the Disparities in Dying?

“It is extremely interesting to me that you have similar incidence rates, but the mortality rate is different and you wonder why is that?” asks Shaina Rozell, MD,  an Illinois cancer physician. 

“A lot of it has to do with the time in which women actually seek care. African American women are seeking care at later stages.”

A 3-minute video from MD Newslines. 

Why Is This Happening?

“Here’s some research that may surprise you and really hits home for me,” says television journalist Robin Roberts.

“African American women are more likely to die from breast cancer. 

Why is this happening? And what can be done about it? We take a closer look.”

A 6-minute video from WebMD

Aggressive Cancer

“We see that African American breast cancer patients tend to be diagnosed at younger ages on average,” says Lisa Newman, MD, chief of Breast Surgery at New York-Presbyterian/Weill Cornell Medical Center in New York. 

“Also very concerning is the  higher rates of biologically aggressive cancer in African American women.”

A 2-minute video from OncLiveTV.

Oluchi Oke, M.D.

"Lack of health insurance is a barrier"

“Lack of health insurance is a barrier in receiving timely screening to detect breast cancer early on and is a big reason that we see higher breast cancer death rates in Black women,” says Oluchi Oke, MD, an oncologist at the University of Texas MD Anderson Cancer Center.

“The most well-known study looked at five factors that may impact the difference in outcome between Black versus Caucasian women with stage 1-3 breast cancer, including demographics, characteristics of cancer, comorbidities, health insurance, and type of treatment.”

“The difference in health insurance was the biggest contributor to the difference in death rate for each group. Almost three times as many Black women were uninsured compared to white women, and 35% of the excess risk of death from breast cancer in Black women compared with white women was due to a difference in health insurance. The type of tumor also contributed to the increased risk of death, but not as significantly as the lack of insurance contributed.”

See “An Expert Explains How Racial Disparities in Breast Cancer Care Contribute to Poor Outcomes for Black Women And how to close the health care gap” by Nina Bahadur on the Self magazine website (October 25, 2021)

Six drivers of breast cancer disparities

The Susan G. Komen Foundation conducted focus groups in 10 major metropolitan areas to understand the many barriers Black women face in preventing, treating and surviving breast cancer. The research identified several trends that exist to varying degrees in each metropolitan area. 

Source: “Susan G. Komen Launches “Stand For H.E.R.”, A Health Equity Revolution To Improve Breast Cancer Outcomes In The Black Community” (August 4, 2021)

Black women often feel ignored or met with disapproval by heath care providers and others in the health care system. Some experience harsh, uncompassionate and unnecessarily painful treatment.

Many health care facilities that provide quality care do not accept Medicaid, Medicare or other lower-cost health exchange plans. Black women on these plans often feel discriminated against even when the hospital accepts the insurance.

Health care providers often do not grasp the barriers some Black women face, including lack of access to healthy foods and economic insecurity.

Many cannot afford to travel to high-quality care locations or are concerned about losing their job if they take time off for appointments.

The quality of health care is segregated. High-quality institutions are located in predominately white neighborhoods, while Black communities are often supported by community clinics that often do not meet quality standards of care.

Barriers plague access to genetic counseling and testing services in the Black community, which are valuable for those with a family health history of cancers. 

Breast Cancer in Hispanic Women

Hispanic women tend to be diagnosed at more advanced stages

“Hispanic women tend to be diagnosed with breast cancer with more advanced stages,” says Mariana Chavez Mac Gregor, MD, breast cancer physician at the University of Texas MD Anderson Cancer Center.

“We think this is due to a number of factors. Less access to healthcare, lower level of health literacy, a prolonged time between seeking medical care and getting treatment started.”

“Screening in many households is not a priority. You have a lot of things to take care of around the house, take care of the kids, work.”

A 4-minute video from Lifescript TV.

Breast Cancer can be earlier, more aggressive in Hispanic/Latina Women

Not only is breast cancer the leading cause of cancer deaths in Hispanic/Latina women living in the U.S., but the disease tends to affect these women at a younger age and is more aggressive in them than in many other populations.

Unfortunately, the low rate often means that Hispanic/Latina women and their healthcare providers are less likely to worry about the disease.

Source: “Breast Cancer in Hispanic/Latina Women” by Jean Campbell on the VeryWell Health website (July 27, 2021)

"Latina women less likely to get their annual screening mammogram"

“One in ten Latinas will be diagnosed with breast cancer in their lifetime, yet Latinas are less likely to get their annual screening mammogram,”  says cancer surgeon  Sylvia Reyes of Mount Sinai Union Square of New York. 

“This often leads to later diagnoses.”

“As a community, we can use one of our greatest assets: our strong sense of family to make up this difference.”

A 1-minute video from Mount Sinai Health System (2020) 

"Story of breast cancer in Hispanic women or Latinas is one that has not been fully told"

Overall, breast cancer rates in Hispanic women are 28 percent lower than in non-Hispanic White women — but that doesn’t give the complete picture. Breast cancer in Latinas and Hispanic women may remain undiagnosed until later stages when it is more difficult and expensive to treat.

That’s one reason Hispanic women and Latinas are about 30 percent more likely to die from their breast cancer than non-Hispanic White women. They are also at higher risk for triple-negative and human epidermal growth factor receptor-positive breast cancers, which are more aggressive than other types of breast cancer.

“Latinas are less likely to seek genetic counseling or testing for breast cancer compared to non-Hispanic White women. They also have lower rates of mammography screening,” says Laura Fejerman, co-director of Latinos United for Cancer Health Advancement or LUCHA at the University of California Davis.

“Low-income Latinas are getting left behind because they are not aware of the role genes play in breast cancer and, if they become aware, often they don’t have access to genetic counseling and testing,” she adds.

Source: “Community health educators help Latinas access breast cancer prevention and treatment” on the UC Davis Health website (May 5, 2022).

State by state breast cancer death rates

Breast cancer death rates in most states are highest for Black women and lowest for Hispanics, Asian Americans, Native Hawaiians, and Pacific Islanders

"I'd like to talk to you about something very important"

“The disparities in breast cancer treatment that African American, LatinX, and LGBTQ people often face,” says Nicole Mitchell, MD, an OBGYN surgeon at the Keck Medicine and USC Norris Comprehensive Cancer Center in Los Angeles.

“There are substantial gaps that people in these groups deal with regarding detection and treatment outcomes.

Black women have the lowest survival rate of any racial or ethnic group. This is partially because black women tend to have more aggressive breast cancer types.

Hispanic women tend to be diagnosed with breast cancer at a later or more advanced stage than white women. As a result, they tend to show up at the doctor with larger tumors.”

A 3-minute video from Keck Medicine and USC Norris Comprehensive Cancer Center. 

Voices about Breast Cancer

Linda Goler Blount

“Black women and White women actually get mammographies at about the same rate, there’s no disparity there,” says Linda Goler Blount, president of the Black Women’s Health Imperative.

“But our breast cancers get detected later when they’re harder to treat, so Black women tend to die at about a 40 percent higher rate beause of that. 

In 1981, Black women and White women had the same mortality rate.

What happened since 1981? We learned to detect breast cancer and we learned to treat it. So what we see now, this disparity reflects who got access and who didn’t.”

A 5-minute video from the Tamron Hall Show.

Frita McRae Fisher, MD

“I want you to fight breast cancer because she’s nasty,” says Frita McRae Fisher, MD.

“I’m sick of her. She kills over 40,000 women in the United States each year. She’s the second leading cause of cancer death in women.

If you think you’re safe because no one in your entire family has ever been diagnosed with breast cancer, think again because 85 percent of women diagnosed with breast cancer have no family history. Oh, she’s sneaky.

Breast cancer deserves to be beaten. Let’s fight.”

A 9-minute video from Dr Frita

Mary J. Blige

“So often as Black women, we prioritize everyone and everything, our partners, our children, work. But we need to be intentional about loving ourselves enough to take some time to see about our health,” says singer and actress Mary J. Blige.

“I’m speaking openly about getting mammograms because I want us to begin to feel more comfortable and more empowered to talk about our breast health. I was in my 40s when I got my first mammogram. My body started talking and I started listening.”

“If you’re a Black woman in your 40s, it’s time to schedule your mammogram today. Having a mammogram can save your life.”

A 3-minute video from the Black Women’s Health Imperative.

Breast Cancer Disparities in 10 Major Metropolitan Areas

Susan G. Komen’s initiative Stand for H.E.R., a Health Equity Revolution, aims to reduce breast cancer disparities experienced by Black women starting in the 10 U.S. metropolitan areas where the inequities are greatest.

Read Susan G. Komen’s analysis of the breast cancer disparities in each of these metropolitan areas and what is needed to reduce these disparities. 

Closing the Breast Cancer Gap: A Roadmap to Save the Lives of Black Women in America (2021)

About Breast Cancer

Get basic information about breast cancer, various risk factors, prevention methods, and detailed information about breast cancer detection through mammograms, ultrasounds, and other tests from the American Cancer Society.

Learn what breast cancer is and about symptoms, risk factors, mammograms, diagnosis, and treatment for breast cancer from the Centers for Disease Control and Prevention.

Learn about breast cancer prevention, screening, treatment, statistics, research, clinical trials, and more from the National Cancer Institute of the National Institutes of Health (NIH).

Changes that are not normal

So you’re worried because you’ve noticed a change in your breasts and you’re wondering about breast cancer symptoms.

You probably already know this, but breasts change a lot throughout life. Puberty, getting pregnant, breastfeeding, getting older. All of these cause changes that are normal and healthy. But some changes aren’t.

A 2-minute video from Planned Parenthood.

Signs of Breast Cancer?

“One of the ones that folks know the most about, of course, is the lump, but there are others,” says Temeika Fairley, PhD,  Senior Health Scientist at the CDC.

“Like any unusual rash on your breast that may be dimply. The skin could be flaky. Any discharge in the breast, blood or fluid, other than breast milk. When there is a change that’s unusual, follow up with your doctor as soon as possible.”

A 1-minute video from the Centers for Disease Control and Prevention (CDC)

Cambios que no son normales

Estás preocupada porque notaste algo diferente en tus senos y te inquieta que pueda ser un síntoma de cáncer de mama.

Primero que todo, no te asustes.

Quizás ya lo sepas, pero los senos cambian mucho en las distintas etapas de la vida. En la pubertad, los embarazos, la lactancia o al hacerse mayor… ocurren cambios que son normales y saludables.

A 2-minute video from Planned Parenthood.

About Triple Negative Breast Cancer (TNBC)

Black women are twice as likely to be diagnosed with triple-negative breast cancer compared with white women. Triple-negative breast cancer tends to be more aggressive than other types of breast cancer.
Source: “Triple-Negative Breast Cancer Deadlier for Black Women, Partially Due to Lower Surgery, Chemotherapy Rates” on breastcancer.org

Triple-negative breast cancer (TNBC) accounts for about 10-15% of all breast cancers. These cancers tend to be more common in women younger than age 40, who are African-American, or who have a BRCA1 mutation.

Triple-negative breast cancer is a kind of breast cancer that does not have any of the receptors that are commonly found in breast cancer.

Triple-negative breast cancers (TNBC) need different types of treatments because they are estrogen receptor-negative, progesterone receptor-negative and HER2-negative.

 
The report Disparities in screening and diagnosis for triple negative breast cancer describes the impact that social determinants of health and differences in access to screening and diagnosis have on the survival of women with Triple Negative Breast Cancer.

And it highlights how health policies in the United States can support women’s access to timely screening and diagnosis.

From the Tigerlily Foundation and Gilead Sciences

TNBC Lacks 3 Cell Receptors

Breast cancer is generally classified based on the presence or absence of 3 receptors known to fuel most breast cancer tumors:

  • Estrogen
  • Progesterone
  • HER2

A diagnosis of TNBC mans that the tumor does not exhibit any of these three known receptors.

A 3-minute video from Roche.

Triple Negative Doesn't Mean Triple Worse

Triple negative breast cancer doesn’t mean that your cancer is triple worse than someone else’s. It just tells your oncologist that your tumor isn’t going to  respond to targeted therapies such  as hormones or HER2 treatments.

Triple negative breast cancers tend to  grow more aggressively and spread more quickly than  most other  types of breast cancer.  Luckily, chemotherapy works best for this subtype. Just like a herbicide, it can kill most of the fast-growing weeds in your garden.

A 4-minute video from the Dr. Susan Love Foundation.

TNBC Common in West Africa

“Ghanaian women in Western Sub-Saharan Africa have a very high risk for triple negative breast cancers and more than half of the breast cancer patients in Ghana have triple negative tumors,” says breast cancer surgeon Lisa Newman, MD, of Weill Cornell Medicine in New York.

“This suggests that there is something related to western Sub-Saharan African ancestry that predisposes women for a risk of having these biologically aggressive breast cancers.”

A 6-minute video from MDedge.

"Black women diagnosed with TNBC are in an uphill battle against barriers"

“Race-related health disparities are a matter of life and death. Having grown up as a Nigerian immigrant in America with a nurse for a mother and a  Master’s degree in Public Health under my belt, I’m incredibly aware of the challenges and disparities black women face.” says actress Yvonne Orji.

“Healthcare symptoms get ignored. Risks go unrealized. Diseases progress. This injustice has created a silent crisis and we’re here to give it a voice in partnership with breast cancer advocacy community.”

Uncovering TNBC was developed specifically for Black women to address the barriers and unique challenges that they face on their journey with Triple Negative Breast Cancer or TNBC.

TNBC accounts for about 10-15% of all breast cancers. It’s aggressive and often difficult to treat. Now, no matter what type of cancer you have, you’re in for a fight.

But for Black women who are at high risk or are newly diagnosed with TNBC, it can be an uphill battle against barriers like unsatisfying communications with doctors, delays between diagnosis and treatment and lack of adequate insurance or resources.”

A 2-minute video from Merck.

Uncovering TNBC: Stories of Resilience
The stories of three women who faced—and rose above—the challenges of TNBC.

Damesha from Charlotte, North Carolina
A 7-minute video from Merck

Sharon from Richmond, Virginia
A 6-minute video from Merck

Tiah from Atlanta, Georgia
A 7-minute video from Merck

An interactive app to answer questions about TNBC

Funded by the Centers for Disease Control and Prevention and the National Association of Chronic Disease Directors. Available on the web and as an Apple or Android app.

"There were definitely signs that I ignored"

“My doctor had been urging me to get a mammogram, but I kept puting it off because I was like, people don’t get breast cancer until they’re 40,” says Tomika.  “And then I just decided to go ahead and get it over with so he could leave me alone.” 

Her diagnosis: triple negative breast cancer. 

“A lot of women are putting off screenings. But I want to encourage you not to do that. Make yourself the number one priority because you never know that’s going on inside your body.”

A 2-minute video from PatientPoint Studios.

About Inflammatory Breast Cancer (IBC)

Women with inflammatory breast cancer are living longer, but the gap between White and Black patients persists

Women with inflammatory breast cancer — a rare, highly aggressive form of the disease — are living about twice as long after diagnosis than their counterparts in the mid-to-late 1970s, according to University of Michigan research led by Hannah Abraham (above).

But despite overall improvements in survival, the analysis showed an ongoing disparity in life expectancy between White and Black patients.

The factors behind these racial disparities “might include awareness about the signs and symptoms of IBC among Black patients, biological and genetic differences, delays in diagnosis and treatment, the standard of care patients receive, including follow-up and survivorship care, and environmental factors,” said Abraham.

See “Women with inflammatory breast cancer are living longer, but the gap between white and black patients persists” on the University of Michigan Institute for Healthcare Policy & Innovation website (October 12, 2020)

"This is a a type of breast cancer that does not show up with a lump and rarely shows up in mammograms"

Black women are 72 percent more likely than White women to be diagnosed with inflammatory breast cancer, a rare but aggressive form of breast cancer. Black women are diagnosed with this cancer at an average of four years younger than White women. And Black women die an average of one and one-half years earlier than White women with the disease.

Source:  Incidence and survival of inflammatory breast cancer between 1973 and 2015 in the SEER database (2020).

“This is a type of breast cancer that does not show up with a lump, so it is very often misdiagnosed until it has metastasized into a stage 4 cancer. If we know what to look for, we are so much safer,” says Florida counselor and cancer survivor Martha Van Dam.

“It’s called inflammatory breast cancer because the breast actually becomes inflamed…Another thing you need to know about inflammatory breast cancer is that it very rarely shows up in mammograms.

“The message is this: If you see something different about your breasts, something that changes, that is not normal, do not just assume. If you want to give it a little bit of time, give it a very little bit of time. And if it isn’t better in two days then get it checked out.”

“You really, really hope you can find it at stage 3. If you find it at stage 4, then it’s already spread to a more distant part of the body.”

A 9-minute video from Martha Van Dam

Signs and symptoms of inflammatory breast cancer

IBC causes a number of signs and symptoms, most of which develop quickly (within 3-6 months), including:

  • Swelling (edema) of the skin of the breast
  • Redness involving more than one-third of the breast
  • Pitting or thickening of the skin of the breast so that it may look and feel like an orange peel
  • A retracted or inverted nipple
  • One breast looking larger than the other because of swelling
  • One breast feeling warmer and heavier than the other
  • A breast that may be tender, painful or itchy
  • Swelling of the lymph nodes under the arms or near the collarbone

If you have any of these symptoms, it does not mean that you have IBC, but you should see a doctor right away.
Source: Inflammatory Breast Cancer (American Cancer Society, 2022)

About Inflammatory Breast Cancer

Signs and symptoms of inflammatory breast cancer, how it is diagnosed, stages of the cancer, survival rates, and treatment. From the American Cancer Society.

Learn what breast cancer is and about symptoms, risk factors, mammograms, diagnosis, and treatment for breast cancer from the Centers for Disease Control and Prevention.

What is inflammatory breast cancer?, the symptoms, how it’s diagnosed, how it’s treated, what is the prognosis, what clinical trials are available. From the National Cancer Institute, part of the National Institutes of Health (NIH).

Breast Cancer Screening Recommendations

National Comprehensive Cancer Network (2022)

Women should undergo a risk assessment for developing breast cancer starting at age 25. Increased risk is based on a number of factors including age and family history of certain cancers—including ovarian and pancreatic cancer, not just breast cancer. Average risk means a woman has no known genetic or family history that suggests an increased risk of developing breast cancer. 

From ages 25 to 39, a woman with average risk should see a healthcare professional for a checkup every 1 to 3 years, which should include a breast cancer risk assessment and, if not recently done, a breast exam.

At age 40 and older, a woman with average risk should see a healthcare professional for a checkup every year, which should include an ongoing breast cancer risk assessment and, if not recently done, a breast exam. She should have an annual screening mammogram. If available, a tomosynthesis (3D mammogram) is recommended.

A woman at increased risk for breast cancer should see a healthcare professional at least once a year and may be asked to see one more often.

Source: Breast Cancer Screening and Diagnosis (National Comprehensive Cancer Network, 2022) 
The National Comprehensive Cancer Network (NCCN) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. 

American Cancer Society (2022)

A woman is considered to be at average risk if she doesn’t have a personal history of breast cancer, a strong family history of breast cancer, or a genetic mutation known to increase risk of breast cancer (such as in a BRCA gene), and has not had chest radiation therapy before the age of 30.

Women at average risk between 40 and 44 have the option to start screening with a mammogram every year.

Women 45 to 54 should get mammograms every year.

Women 55 and older can switch to a mammogram every other year, or they can choose to continue yearly mammograms. Screening should continue as long as a woman is in good health and is expected to live at least 10 more years.

Most women at high risk should begin screening with MRI and mammograms when they are 30 and continue for as long as they are in good health. But this is a decision that should be made with a woman’s health care providers, taking into account her personal circumstances and preferences.

Clinical breast exams are not recommended for breast cancer screening among average-risk women at any age. Women should be able to choose between 2D and 3D mammography if they or their doctor believes one would be more appropriate, and that out-of-pocket costs should not be a barrier to having either one.

Source: American Cancer Society Recommendations for the Early Detection of Breast Cancer (2022)

American College of Radiology and the Society of Breast Imaging (2018)

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.  

For women of average risk, The ACR and Society of Breast Imaging recommend annual mammography screening beginning at age 40, which provides the greatest mortality reduction, diagnosis at earlier stage, better surgical options, and more effective chemotherapy. Annual screening results in more screening-detected tumors, tumors of smaller sizes, and fewer interval cancers than longer screening intervals. Screened women in their 40s are more likely to have early-stage disease, negative lymph nodes, and smaller tumors than unscreened women. Delaying screening until age 45 or 50 will result in an unnecessary loss of life to breast cancer and adversely affects minority women in particular.

Screening should continue past age 74 years, without an upper age limit unless severe comorbidities limit life expectancy.

Source: Breast Cancer Screening Recommendations Inclusive of All Women at Average Risk: Update from the ACR and Society of Breast Imaging (2021)

U.S. Preventive Services Task Force (2016)

Note: These USPSTF breast cancer screening recommendations are controversial. They’ve been criticized for being out-of-date, dependent on old studies, and for failing to take into account that Black women are diagnosed at earlier ages with aggressive cancer. Similar complaints have been leveled at the USPSTF prostate screening recommendations. The U.S. Congress has imposed a moratorium on the use of these USPSTF recommendations for denying health insurance coverage for 40+ women seeking an annual mammogram. The USPSTF has been preparing a revision for several years.

See: “Industry Experts Applaud Changes Behind USPSTF Breast Screening Guidelines Update” and “Feinstein, Blackburn Introduce Bill to Protect Access to Breast Cancer Screenings”

For women aged 40 to 49, the decision to start screening mammography prior to age 50 years should be an individual one. Women who place a higher value on the potential benefit than the potential harms may choose to begin screening every two years between the ages of 40 and 49 years. While screening mammography in this age group may reduce the risk for breast cancer death, the number of deaths averted is smaller than that in older women and the number of false-positive results and unnecessary biopsies is larger. The balance of benefits and harms is likely to improve as women move from their early to late 40s.

For women aged 50 to 74, screening mammography every two years is recommended. For women who are at average risk for breast cancer, most of the benefit of mammography results from screening every two years during ages 50 to 74 years.

For women 75 and older, the USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening mammography.

The current evidence is insufficient to assess the benefits and harms of digital breast tomosynthesis (DBT) as a primary screening method for breast cancer.

Source: U.S. Preventive Services Task Force. Breast Cancer: Screening (2016).  The U.S. Preventive Services Task Force is an independent, volunteer panel of national experts in disease prevention and evidence-based medicine who make evidence-based recommendations about clinical preventive services. 

Waiting until 45 or 50 to be screened for breast cancer "is a disaster for women of color"

Minority women are 72% more likely to be diagnosed with invasive breast cancer under the age of 50. Minority women under 50 years old are 58% more likely to present with advanced cancer and are 127% more likely to die than white women from breast cancer.

“I think it really points to the fact that we are failing Black women,” says Debra Monticciolo, MD, former president of the American College of Radiology.

“Waiting until 45 or 50 [to be screened] is not good for any woman, but it’s a disaster for women of color, especially Black women.”

Source: “Improvements needed in breast cancer screening for Black women”

Getting a Mammogram

Locating a Provider

Contact the National Cancer Institute (1-800-4-CANCER) or the American College of Radiology (1-800-227-5463) to find a certified mammography provider. You may want to look for a facility that can do MRI, ultrasound, or other imaging procedures the same day if it’s necessary to get a more precise look.

Source:  breastcancer.org

Insurance Coverage

Medicare, Medicaid and most insurance companies cover the cost of mammograms.Since September 2010, the Affordable Care Act has required all new health insurance plans to cover screening mammograms every 1-2 years for women ages 40 and older, with no out-of-pocket costs (co-payments or co-insurance).

Source: Susan G. Komen

For the Uninsured

The Komen Breast Care Helpline can help you find low-cost breast cancer screening in your area. Call the helpline at 1-877 GO KOMEN (1-877-465-6636) Monday through Friday from 9:00 a.m. to 10:00 p.m. ET.

The National Breast and Cervical Cancer Early Detection Program ((1-888-842-6355) provides access to breast cancer screening to low-income, uninsured and underinsured women ages 40-64. It also provides access to diagnostic testing if results are abnormal, and referrals to treatment if breast cancer is diagnosed.

Source: Susan G. Komen

Questions about Mammography

What is a mammogram? What is breast tomosynthesis? who should get a mammogram?

How can I prepare for a mammogram? What happens during my mammogram? Does a mammogram hurt? What are the risks of getting a mammogram?

How will I get my results?

A 4-minute video from the Department of Radiology at Massachusetts General Hospital.

Questions to ask

“Younger women tend to have denser breasts, but mammograms are not the best when you have dense breast tissue,” says Regina Hampton, MD, breast cancer surgeon at Luminis Health in Maryland. 

“Mammograms get better as women get older and breasts become less dense. So, it’s really important for patients to look at their report and see what it’s saying about breast density.”

A 2-minute video from the Patient Empowerment Network.

Your First Mammogram

First of all, wear a two-piece outfit so you only have to remove your top. Give your beauty products the day off.

Think of the X-ray machine as your friend. You’ll give it a quick hug as it compresses your breast between two flat paddles. The machine will use a safe, low-dose X-ray to take multiple images of each breast.

The procedure takes only about 20 seconds per image. And that’s it!

A 1-minute video from MD Anderson Cancer Center.

"If a patient waits until something is felt, it may be too late already."

“When you pick up an early cancer the vast majority of the time, it’s so small women can’t feel it,” says diagnostic radiologist Murray Rebner, former president of the Society of Breast Imaging. “We want to find cancers that are lymph-node negative and under a centimeter in size. Those are the ones that really make a difference in terms of ultimately providing a cure for these patients. If a patient waits until something is felt, it may be too late already.” Source: “More needs to be done to help Black women fight breast cancer, says OUWB prof.”

What to know about tomosynthesis

Tomosynthesis is a type of mammography. It helps screen for breast cancer, and because it involves relatively new technology, it is only available in some hospitals.

Standard mammograms and tomosynthesis both use X-rays to create an image of the breast, but while the image from a mammogram is 2D, the image from tomosynthesis is 3D.

Because it produces a 3D image rather than a flat one, tomosynthesis give more accurate information about changes in the breast, including whether they warrant further evaluation.

See “What to know about tomosynthesis for breast cancer” by Hannah Nichols on the Medical News Today website (January 12, 2022)

Don't let COVID delay a mammogram

Because of COVID, “we are seeing a high number of breast cancer cases being diagnosed later than what they were supposed to be diagnosed because of the delay in care,” says Delia Guaqueta Segura, MD, breast cancer oncologist at the Memorial Breast Cancer Center in South Florida.

“I am here to urge you to stop being afraid about coming to the hospital. Remember that early screening with mammogram, ultrasound or MRI can help detect breast cancer and can improve the chances of cure.”

A 2-minute video from the Memorial Healthcare System.

A mammogram saved my family

“Because I was diagnosed with breast cancer early, my sisters were screened,” says breast cancer survivor Renee.

“My younger sister was not symptomatic at all. There was no lump that she could feel. The mammogram found a microsopic lump that you couldn’t see or feel. It saved her life.

To the person who’s afraid of a mammogram: I’d be afraid not to have it.”

A 2-minute video from Johns Hopkins Medicine.

Oprah: Make screening "a birthday health-filled well-being celebration"

“It’s time to normalize asking one another, ‘When’s the last time you had a mammogram’?”

“Here’s an idea: schedule that appointment together if that helps you follow through. One of the things I’ve learned is to make it a birthday, health-filled, well-being celebration! If you schedule it every year around your birthday, that signals you’re taking care of yourself and taking care of your girls!”

A 2-minute video from Hologic, Inc.

Four ministers in Pittsburgh area urge women to get screened for breast cancer

Rev. Richard W. Truss

“Our female friends and relatives definitely need to get tested. Do it for your family.”

Pastor Latisha Robinson

“I think that most women think they’re too young and they think it won’t happen to them. I was diagnosed with breast cancer. I never thought it would have happened to me.” 

Rev. M. Shawn Kirkland

“There are too many people dying in the African American community of treatable diseases. With examinations and testing, we can really extend lives. Get a mammogram.”

Pastor Earlene Coleman

“I thought they’re looking so they can find something, not realizing the truth is they’re making sure everything is OK. Please, please, get screened for breast cancer.”

Breast Self-Exams

There is very little evidence that regular physical breast exams done by either a health professional or by women themselves help find breast cancer early when women also get screening mammograms.

Most often when breast cancer is detected because of symptoms (such as a lump), a woman discovers the symptom during usual activities such as bathing or dressing. Women should be familiar with how their breasts normally look and feel and should report any changes to a health care provider right away.

This does not mean that these exams should never be done. In some situations, particularly for women at higher than average risk, health care providers may still offer clinical breast exams along with counseling about risk and early detection. And some women might still be more comfortable doing regular self-exams as a way to keep track of how their breasts look and feel. 

Source: American Cancer Society Recommendations for the Early Detection of Breast Cancer

Breastcancer.org still believes that breast self-examination is a useful and important screening tool, especially when used in combination with regular physical exams by a doctor, mammography, and in some cases ultrasound and/or MRI.

Breast self-exam is a convenient, no-cost tool that you can use on a regular basis and at any age. We recommend that all women routinely perform breast self-exams as part of their overall breast cancer screening strategy.

How to do a breast self-exam: The five steps
(breastcancer.org)

Genetic Testing and Mutations

Genetic testing to learn about breast cancer risk

Genetic testing gives people the chance to learn if their breast cancer or family history of breast cancer is due to an inherited gene mutation.

In the United States, 5 to 10 percent of breast cancers are related to a known inherited gene mutation. About half  are related to a BRCA1 or BRCA2  (BReast CAncer genes 1 and 2) inherited gene mutation. These are the most well-known of these gene mutations.

Other inherited genes are less common. Most don’t increase the risk of breast cancer as much as BRCA1/2 gene mutations do, but they can increase the risk of other cancers. Data on these mutations and their related cancer risks are still emerging and will likely change over time.

Source: Genetic Testing to Learn About Breast Cancer Risk (Susan G. Komen)

Genetic testing to guide breast cancer treatment

Genetic testing may be recommended after a diagnosis of early or metastatic breast cancer. Genetic testing looks for gene mutations in the hereditary genes of a person. Genetic testing may help guide breast cancer treatment. Some breast cancer treatments are only given to people who have certain inherited gene mutations.

Testing also gives a chance to learn if the breast cancer is related to an inherited gene mutation, which can be important information for family members.

Testing for tumor gene mutations may also be done. The tests look at the genes in the cancer cells. For some people with breast cancer, tumor gene testing can help guide treatment.

Source: Genetic Testing After a Breast Cancer Diagnosis (Susan H. Komen)

About BRCA1 and BRCA2 genes

The most common cause of hereditary breast cancer is an inherited mutation in the BRCA1 or BRCA2 gene. In normal cells, these genes help make proteins that repair damaged DNA. Mutated versions of these genes can lead to abnormal cell growth, which can lead to cancer.

If you have inherited a mutated copy of either gene from a parent, you have a higher risk of breast cancer. On average, a woman with a BRCA1 or BRCA2 gene mutation has up to a 7 in 10 chance of getting breast cancer by age 80. This risk is also affected by how many other family members have had breast cancer. It goes up if more family members are affected.

Women with one of these mutations are more likely to be diagnosed with breast cancer at a younger age, as well as to have cancer in both breasts. Women with one of these gene changes also have a higher risk of developing ovarian cancer and some other cancers.  Men who inherit one of these gene changes also have a higher risk of breast, prostate and some other cancers.

In the United States, BRCA mutations are more common in Jewish people of Ashkenazi (Eastern Europe) origin than in other racial and ethnic groups, but anyone can have them.

See: “Breast Cancer Risk Factors You Cannot Change” on the American Cancer Society website

Dispelling myths of BRCA gene mutations

BRCA mutations have been linked to breast, ovarian, pancreatic and prostate cancers, all of which aside from ovarian cancer, can affect men.

A 4-minute video from AstraZeneca.

Understanding BRCA Mutations and Risk

Everyone has the BRCA genes. Their job is to repair errors that occur in your cell’s DNA. If one or both genes you inherited have a mutation, they might let some errors through.

A 4-minute video from the Dr. Susan Love Foundation.

BRCA Genes and Breast Cancer

Without treatment, a woman who is BRCA1 or BRCA2 mutation carrier is seven times more likely to develop breast cancer and 30 more times likely to develop ovarian cancer before the age of 70.

A 3-minute video from the CDC.

Black & BRCA is a collaboration between the Basser Center for BRCA and its team of patient advocates, researchers and healthcare professionals to bring tailored resources and support to the Black community. The Basser Center is part of the University of Pennsylvania Health System, a major multi-hospital health system headquartered in Philadelphia, Pennsylvania.

“At a time when Black men and women are more likely than the general population to be diagnosed with cancer at later stages when it is less treatable, Black & BRCA seeks to empower individuals to understand their family health history and take action to prevent cancer from one generation to the next.”

Educational Resources

My Experience as a BRCA Mutation Carrier

Erika Stallings is a lawyer, writer, and patient advocate based in New York City. In 2014, she learned that she carried a BRCA2 mutation like her mother. 

“Despite my risk, I avoided getting tested. I was busy living life. Before I knew it, I was 28 years old, about the same age that my mom was first diagnosed. Looking back, I’m a little embarrassed that I pushed it off. But when you’re young, you feel healthy. You don’t expect these huge hurdles to come up, even if you know you’re at risk.”

“I tried to make an appointment for genetic testing at Memorial Sloan Kettering, but was waitlisted due to a shortage of genetic counselors in the United States. In June 2014, I got an appointment at New York University. I did some volunteer work for a breast cancer organization in New York City, and the executive director helped me get an appointment. If it weren’t for them, I would’ve had to wait another six months. In July, I got the results. I had inherited the BRCA2 mutation. I knew it.”

Stallings underwent a preventative mastectomy later that year.

Source: “My Experience As a BRCA Mutation Carrier”(August 25, 2021)

Disparities in genetic mutations?

African American and White Women share same genes that increase the risk of breast cancer

The same genes that increase the risk of breast cancer in U.S. White women also greatly increase breast cancer risk among African American women.

Researchers in 2020 sequenced the germline (inherited) DNA from 5,054 African American women with breast cancer and 4,993 age-matched African American women without cancer looking for mutations in 23 genes linked to a predisposition for cancer. They then estimated the risks of developing breast cancer associated with having a mutation in any of the genes.

These genes include the BRCA1, BRCA2 and PALB2 genes, each of which is associated with a more than seven-fold risk of breast cancer, as well as four other genes associated with a more moderate increase in risk.  Previous studies of women of African ancestry were too small to assess genes other than BRCA1 and BRCA2.

 

“This means that the multi-gene panels that are currently available to test women diagnosed with breast cancer or women at high risk due to their family history will be useful for African American women,” explains Julie Palmer, ScD, (left) of the Boston University School of Medicine.

Rates of genetic mutations similar between Black and White women diagnosed with breast cancer

In a 2021 study of 3,946 Black women diagnosed with breast cancer and 25,287 White women also diagnosed with the disease, the rates of genetic mutations in genes linked to breast cancer were similar.

 

Among the Black women, 5.65% had a mutation in one of the 12 genes, compared with 5.06% of the White women, a difference that is not statistically different.

The researchers, led by Susan Domchek, MD, (right) of the University of Pennsylvania, concluded that all efforts should be made to ensure equal access to genetic testing to minimize disparities in care and outcomes in women diagnosed with breast cancer.

 

The study also confirmed that Black women were more likely to be diagnosed with breast cancer at a younger age, more likely to be diagnosed with triple-negative breast cancer, and more likely to be diagnosed with estrogen-receptor-negative breast cancer (which tends to grow faster than hormone receptor-positive cancer).

Disparities in genetic testing?

Black women less likely to undergo genetic counseling and testing

About five percent of both Black and white women have a genetic mutation that increases their risk of breast cancer, according to a new study of nearly 30,000 patients. 

However, compared to White women, Black women are much less likely to undergo genetic counseling and testing, largely due to differences in physician recommendations or access to care. 

“Our efforts should focus on ensuring equal access to testing to minimize disparities in care and outcomes,” said researcher Susan Domchek of Penn Medicine at the University of Pennsylvania (June 11, 2021)

Read more at “Black and White Women Have Same Mutations Linked to Breast Cancer Risk” on the Penn Medicine website (June 11 , 2021)

Racial Disparities Persist in Genetic Testing

Carlette Burton knew she had a family history of cancer, but she never looked into her genetic risk for BRCA-related cancer until she found a concerning lump in her breast during a self check. After her diagnosis, she had genetic testing done and found out that she has a BRCA mutation.

Burton’s mother also had been diagnosed with breast cancer in her 30s. Her grandmother had had breast cancer, too. She is one of five sisters, “but I don’t ever recall a doctor saying we should get tested.”

Read more at “Racial disparities still persist in genetic testing for BRCA-related breast cancer” by Tracey Romero on the Philly Voice website (April 6, 2021)

Recording your family history

My Family Health Portrait: an online tool from the Surgeon General

Get Genetic Counseling Before Testing

The Centers for Disease Control and Prevention (CDC) says it’s important to get genetic counseling before genetic testing for hereditary breast and ovarian cancer in order to determine whether you and your family are likely enough to have a mutation that it is worth getting tested. Usually, genetic testing is recommended if you have:

  • A strong family health history of breast and ovarian cancer
  • A moderate family health history of breast and ovarian cancer and are of Ashkenazi Jewish or Eastern European ancestry
  • A personal history of breast cancer and meet certain criteria (related to age of diagnosis, type of cancer, presence of certain other cancers or cancer in both breasts, ancestry, and family health history)
  • A personal history of ovarian, fallopian tube, or primary peritoneal cancer
  • A known BRCA1, BRCA2, or other inherited mutation in your family

Carletta (above) tested negative for BRCA mutations after being diagnosed with breast cancer.

Source: “Genetic Testing for Hereditary Breast and Ovarian Cancer” (CDC)

To find genetic counseling services: 

Source: “Genetic Testing for Hereditary Breast and Ovarian Cancer” (CDC)

Breast Cancer Clinical Trials

“Clinical trials are the main way scientists develop new and improved cancer treatments. Yet less than 5% of adults with cancer participate in clinical trials, and most who do are white.

Disparities in clinical trial participation among Black women could be one of the reasons they have worse breast cancer outcomes than other racial and ethnic groups in the United States..”

Source: breastcancer.org

“The low accrual of ethnic minorities, particularly Black Americans, in breast cancer clinical trials is problematic for several reasons,” says Lajos Pusztai, MD, co-director of the Center for Breast Cancer at the Yale School of Medicine.

 “For one, it means Black patients are not given equitable access to potentially lifesaving new treatments very early on. Secondly, it limits our ability to study potential differences in drug metabolism, toxicity, and efficacy between populations with different ancestries.”

See “Benefits of Pre-surgical Immunotherapy Were Independent of Race in Patients with Aggressive Breast Cancer” on the American Association for Cancer Research website (July 29, 2022)

Why diversity matters in breast cancer research

Not being included in clinical trials may be one of the reasons that Black women have worse breast cancer outcomes than other racial and ethnic groups. Lack of diversity among clinical trial participants means that new cancer treatments are being tested in groups of people that are not representative of the broader patient population that will receive these treatments if they are approved.

“We need everyone appropriately represented because we want to make sure a therapy works the same way and the side effects are the same in different populations,” said Karen Winkfield, MD, executive director of the Meharry-Vanderbilt Alliance in Nashville, Tennessee. “Sometimes a medicine might work better in one population than another. We need to learn these things up front so we can give each patient the right medicine at the right time.”

Up until recently, women of color have been largely left out of breast cancer research, including treatment trials and other types of studies that help doctors understand risk and risk reduction. “The majority of research in breast cancer screening, treatment, and hereditary susceptibility has been conducted on women with European ancestry,” said Lisa Newman, MD, of Weill Cornell Medicine and New York-Presbyterian in New York City. “We therefore face major gaps in knowledge. For example, we don’t know whether African American women might benefit from modified breast cancer screening recommendations, and we have an inadequate understanding of the genetics of triple-negative breast cancer.”

“The reason we want diverse populations in clinical trials is that we want patients present with a range of genetic, social, economic, and geographic factors. We want all patients to benefit from clinical trials, and, when we assess new therapies, we want to understand how they will impact diverse populations,” said Lori Pierce, MD, of the University of Michigan and past president of the American Society for Clinical Oncology.

Source: “Special Report: Increasing Racial Diversity in Breast Cancer Clinical Trials” (BreastCancer.org)

For this Special Report, Breastcancer.org spoke with experts and clinical trial participants about why diversity in clinical research matters, and how you can overcome common barriers that may be preventing you from participating in a breast cancer clinical trial.

Interested in joining a breast cancer clinical trial, but feeling overwhelmed or don’t know where to start? Here are some common questions about the challenges people face in finding and participating in a clinical trial and some helpful tips on how to find trials and make participating easier:

  • When is the right time to consider a clinical trial?
  • How do I start the process of looking for a clinical trial?
  • What should I expect when applying to enroll in a clinical trial?
  • What can I ask of the trial coordinators to make it easier for me to participate in a trial?
  • What costs may be involved with participating in a clinical trial and who can help me navigate the financial and insurance issues?
  • What risks are involved with joining a trial and what safeguards help protect participants?
  • How can I find other women who have participated in clinical trials to talk with about their experiences?
  • How can I get support and make sure I get my questions answered at my appointments related to enrolling in a clinical trial?

The clinical trial that saved Karen Peterson's life

When Karen Peterson’s Triple Negative Breast Cancer spread to her lungs, spine and ribs, “I went into gear to build a treatment plan. I was told I had a lot of fighter cells and they were sitting in the wings waiting to fight, but they needed a little help.”

Peterson talked her way into a new clinical trial, despite only a 4 percent chance it would work for her. “It was better than nothing, so I said why not? I got lucky.” The clinical trial tested a combination of two drugs that saved her life. 

“It’s important to take ownership of your health. Self-advocacy is very important. Self-advocacy saved my life.”

An emotional 5-minute video from the American Association for Cancer Research.

"If cancer outcomes improve for Black women, they will improve for all women"

When Tammie Denyse was 39 and a single mother with three children, she was diagnosed with breast cancer.  After a lumpectomy, adjuvant chemotherapy and radiation therapy, her oncologist offered her an opportunity to participate in a clinical trial.

“I’m not blind to the history in this country of medical experimentation on Black people, and, at first, I was hesitant to participate in the study,” she recalled.  But when she found out that too few Black women were participating to know whether they were responding to the treatment, she joined the clinical trial.

The research changed the standard of care for women with breast cancer and minimized the impact of side effects on their lives. Denyse is now cancer-free.

“My experience with cancer empowered me to be assertive and to become an equal partner in the decision-making of my care, and I wanted other Black women experiencing a cancer diagnosis to have that same sense of empowerment.”

She and her sister launched Carrie’s TOUCH, a nonprofit breast cancer organization, to give a voice to Black women and to significantly increase the number of Black breast cancer survivors.

Source: Why Are Black Women Still Dying at Higher Rates Than White Women From Breast Cancer?

When We Tri(al): a campaign to increase Black participation in clinical trials

"There's not enough research around how breast cancer treatment works in Black bodies"

“The purpose of our When We Tri(al) movement is to help our Black community understand the importance of breast cancer science.  Black women need to know that our breast cancer deserves special attention and we all together need to advance the science,” says Ricki Fairley, triple-negative breast cancer (TNBC) survivor and the Co-Founder and CEO of TOUCH, The Black Breast Cancer Alliance.

“Imagine a world where we have a drug that says ‘For Black Women’ on the label.  We won’t get that without participating in clinical trials. Our participation in clinical trials, changes the game through advancements and breakthroughs for all Black women diagnosed with breast cancer.

There are a lot of reasons for what we call Black breast cancer, including access to care, implicit bias and racism and how we’re treated by medical providers.

But a major reason is that the drugs that we have now were not adequately tested on Black bodies. There’s not enough research around how breast cancer treatment works in Black bodies and not enough science on how Black women experience breast cancer differently.  We need drugs that work better for us and we need more effective treatment options.”

A 4-minute video from TouchBBCA.

Doctors design research studies involving volunteers, called clinical trials, to find better ways to care for people with breast cancer. Clinical trials are used for all types and stages of breast cancer. Many focus on new treatments to learn if they are safe, effective, and possibly better than the existing treatments.

People decide to participate in clinical trials for many reasons. For some, it is the best treatment option available. Because no standard treatments are perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. Others volunteer because, even if they do not benefit directly from the clinical trial, their participation may benefit future people with breast cancer.

Breast cancer trials never use a placebo instead of standard treatment. Most often, you will receive either the new treatment or the standard treatment. So even if you do not get the new drug or other new therapy, your breast cancer will be treated the same as if you were not in the trial.

Source: Breast Cancer: About Clinical Trials (Cancer.Net)

  • The importance of clinical trials
  • Where do clinical trials take place?
  • Phases of cancer treatment trials
  • Breast cancer trials never use placebos instead of standard treatments
  • Benefits of clinical trials
  • Possible drawbacks of clinical trials
  • Who can join a clinical trial
  • When to consider joining a clinical trial
  • Talking with your health care provider and clinical trial staff
  • Eligibility for clinical trials
  • How to enroll in a clinical trial
  • Informed consent and clinical trials
  • Questions you may want to ask the clinical trial research team
  • Who funds clinical trials
  • Where to find a clinical trial

Source: Clinical Trials (Susan G. Komen)

Breast Cancer Support and Facebook groups

Breast Cancer Action “is a national grassroots organization challenging the status quo and working to address and end the breast cancer epidemic.

Breastcancer.org is dedicated to providing the most reliable, thorough, and easy to understand information about breast cancer and breast health for patients and caregivers. Our online Community offers comfort and support through every aspect of diagnosis, treatment, and beyond.”