So it’s funny for me to share my story like this. A lot has changed.

I can still remember every detail of the day I was diagnosed with Stage 4 breast cancer. It was February 22, 2022, and I was 37 years old. I remember waking up with a headache, but I didn’t think anything of it. I went into work — I’m a senior revenue cycle manager, and I work with physician practices, and at the time I was working in-person at a practice. Something just didn’t feel right, so I asked the medical assistant to check my blood pressure.

My blood pressure was 160 over 100. (Editor’s note: normal blood pressure for most adults is less than 120 over less than 80, according to the National Institute on Aging.) So now my blood pressure was really high, I had this headache, and I had tingling in my arm, and I knew I had to run over to urgent care. When I got there, my blood pressure was even higher, and they told me I had to go to the hospital.

Keep in mind, this is all on my lunch break. And the first thing I said to them was, “Does this really have to be done right now? Because I need to pick up my kids from school.”

And they said, “Yes. We want to call you an ambulance, that’s how serious this is.” That was when I called my husband and told him what was going on, asked him if he could pick up our three kids (ages 18, 11, and 10 now).

When I got to the hospital, they ran some tests. My blood work came back fine, but they told me they wanted to take a chest X-ray. As soon they said that, I knew something was going on.

I get the X-ray and the doctor calls me in. He was younger, I could tell he was new. He was shaking with the paper in his hand. And he says, “We found a mass in your breast.”

I was pretty calm in the moment, but I just couldn’t believe it. I thought he was going to say, “Oh, you have anxiety. It’s stress-related.” You think of all the things it could possibly be, but you never think it’s going to be cancer.

I followed up with that same hospital for the next steps — they wanted to do an ultrasound, a mammogram, and a biopsy, all that same week. I was talking to a new doctor there, and he immediately wanted to do surgery, but I work in the medical field. I knew I should be getting a PET scan and probably an MRI, in addition to another CAT scan, before we got to surgery. (Editor’s note: a PET scan is an imaging test that looks at the metabolic function of your tissues and organs. It is often used to detect cancer and determine whether it has spread, per Mayo Clinic.)

But when I asked about the PET scan, he told me my insurance wouldn’t cover it. But I had already checked with my insurance and I knew it was a covered benefit.

I don’t know what he was thinking. Was it that he didn’t want to take the time to do the authorization or did he not have the staff in place to do it? Or was it because I’m Black, and he just assumed that I didn’t have good insurance? I hate to say that, but we all know it’s there.

And on top of all that, there was just no empathy for me. I get it, they deal with this all day long, but I was just diagnosed with cancer. I was a bit annoyed with his bedside manner. Can you just ask me if I’m OK?

I just knew that this wasn’t the care I needed, so I got a second opinion. And at the next provider’s office, I spoke with a nurse navigator, and the first thing she said to me was, “Are you OK?”  They asked if I needed help with my children and how my children and spouse were dealing with the diagnosis. It was just a totally different experience.

They got me the scans I needed to confirm the diagnosis, and they’re also the ones who found that the cancer had already spread to other spots. There were three masses in my breast, but it was also in my lymph nodes, my ribs, my hips, my shoulder, and my neck.

The first doctor wanted me to get surgery right away, but my new doctors told me I wasn’t even a candidate for surgery. There was no point to operating on my breast when it had spread to so many places. I think it was my medical background that empowered me to get a second opinion, but I also just had a gut feeling and I acted on it. And I probably wouldn’t be sitting here today if I allowed that first provider to do surgery on me.

I started chemotherapy once a week to shrink the masses down. I’ve improved since, so now I get it once every three weeks, and I’m also getting injections and taking an oral medication. My goal is to get to remission, and I know I’m going to get to that place where I can ring that bell and say, “This is my last chemotherapy session.”

It hasn’t been easy. I have lost fingernails from the chemo, I’ve lost toenails, I lost my hair. The neuropathy was a nightmare, this tingling and itching in my hands and feet. I had to wear mittens and booties with ice packs in them, because that was the only thing that would calm it down. I also lost weight, had vomiting and diarrhea. How can I forget how fatigued I was and am, even till this day? At one point all I could taste was metal, which is also a side effect of chemo.

And there were times when I felt hopeless. I prayed a lot, and I leaned on my husband a lot. He just kept reminding me that we weren’t going to let cancer win.

I had to push myself to stay present with my family though, especially my kids. One time, I got sick and had to stay in the hospital for two days — not COVID, not RSV, just a regular cold that the cancer made worse. After that, I was scared to go out again. I didn’t even want to go to the grocery store.

But I saw how it affected my kids and it broke my heart. My son plays basketball at his high school, and I was streaming his games online instead of going in-person, but I think physical presence means a lot to my kids. Once I realized that, I started to get more involved, coming to games and wearing a face mask. I think just being present made things better for them. Now I’m not missing anything. I’m going to be there because my family means the world to me.

But at the same time, I realized I had to get more vulnerable. I had been ashamed at my diagnosis, because I thought having cancer was going to disable me, so I wasn’t going to be able to do everything I used to. I still have trouble letting myself rest, even through the chemo, because I want to show I’m still strong. I can still do it. That’s just how I’ve always been.

The more I opened up about it and let other people help, though, the better I felt. My family even threw me a fundraiser event, which I initially didn’t want because I didn’t want people to feel sorry for me. But eventually we did it, and we had 212 people show up, even people I didn’t know who just wanted to help and support. I couldn’t believe it. They had something like 60-plus raffle baskets they auctioned off.

So with all of that, I felt like it was time to open up and talk about everything, even though I’m such a private person. I feel like if I can give back just by talking or giving advice, then you know what? I’ll do it.

And the advice I’d give to other Black women especially is, first of all, if something doesn’t feel right, go with your gut and get it checked out. Don’t wait. And second, you have to take care of yourself first.  If you don’t take care of yourself, how can you take care of anyone else? To be honest, I was not taking care of myself. Yes, I was 37, so I wasn’t due to start getting mammograms yet, but I wasn’t a healthy person. I didn’t eat healthy and I didn’t exercise.

My suggestion to other Black women would be to make healthier choices by eating better, by exercising every day. It only takes a few minutes to take a walk. Even now, I have a desk cycle for exercise, because I sit behind a desk all day. Every little bit counts. As Black women, we have to do better for ourselves and for our families.

When people ask me how I feel now, it’s like, “I woke up to see another day, and I’m thankful for that.” I can deal with the chemo side effects, I can deal with all of it, as long as I’m here to see another day and see my husband off to work. As long as I’m here to see my kids off to school, I’m good.

As told to Maggie Ryan

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So how does it work? Based on data programmed into a computer, an AI algorithm creates a standard to determine malignancy and risk scores that will directly impact the level of care a patient receives. The Food and Drug Administration believes this information will help researchers understand the relationship between patient characteristics: age, ethnicity, breast density, malignancy, and risk, with the ultimate goal of reducing rates of breast cancer. It’s a worthy goal, but experts have found one major issue: the success of AI screenings for white and Asian women compared to disappointing outcomes for Black women.

Dr. Regina Barzilay is a professor of electrical engineering and computer science at MIT who specializes in the intersection of AI and health. While not involved in the Duke study, Dr. Barzilay told SheKnows that AI tools may sometimes “underperform on certain racial or demographic groups if they are underrepresented in the training data on which the algorithm is developed.”

The Duke Medical team wasn’t the only group to show this type of bias in the research. Other studies focused their efforts on European women and most clinical trials were outside of the United States, further erasing unique markers of Black women in their reports. “One big fix that needs to happen is to have large datasets of mammograms that represent a diverse patient population,” Dr. Barzilay noted. “Another important aspect is testing these models in different demographic groups to ensure that they are unbiased.”

The problem is, the FDA does not require diversity of data, continuing to rely on racially biased risk assessment tools like Tyrer-Cuzick or the Gail Model that do not factor in family history of cancer or racial or ethnic differences when creating guidelines — and that affects these AI screenings. According to Breastcancer.org, technicians train the AI by entering millions of images into computers so AI software can convert the information into a mathematical representation of what a normal mammogram looks like and what a mammogram with cancer looks like. From that information, the AI creates a baseline that becomes the standard of what normal breast tissue looks like. But if that baseline is based on a dataset that’s skewed towards a certain demographic, that means the current AI screening practices may not be the best option for those outside the demographic; in this case, non-white and older women.

The Duke study reveals the limitations of AI breast cancer screenings that we still need to overcome. For Black women who are genetically predisposed to breast cancer due to first degree (parent, child, or cousin) family history or presence of the BRCA gene, or even low risk candidates hoping to stave off the disease, the news is discouraging. As long as the standard for normal breast tissue excludes patient characteristics along race, health, and life span, outlooks for Black women remain poor.

Inequities in health care for Black women are not new, and medical professionals are dedicating their careers to understanding why this demographic is prone to more advanced stages of breast cancer and cancers in general. Dr. Melissa Davis of Morehouse Medical College is one who has answered the call with SAMBAI, which stands for Social, Ancestry, Molecular and Biological Analysis of Inequalities. With a $25 million dollar grant from the Cancer Grand Challenges, Dr. Davis’ team is committed to creating a database of 40,000 people from multiple African countries, as well as people of recent African heritage in the UK and US, to ensure representation for more accurate data collection. After all, AI algorithms are only as good as the information they’re given.

Another option to improve AI screenings of Black women is MIRAI, an AI screening tool developed by Dr. Barzilay and Dr. Adam Yala, an assistant professor in computational precision health, statistics, and computer science at UCSF and UC Berkeley. According to Dr. Barzilay, “MIRAI addresses a different task: we aim to predict future risk of the disease. It is important because it enables extra screening and preventative resources for women who are at high risk.” And it’s especially relevant for Black women, who are diagnosed with breast cancer at a younger age, on average, than white women, according to research. “At the same time, we don’t want to over screen them,” Dr. Barzilay added. “One possible scenario is to screen them first at a younger age in order to identify a small cohort of women who are truly high risk and who need to be screened differently.”

So far, only 9% of radiologists in the United States are regularly using AI for breast imaging, according to Breastcancer.org. It’s also important to note that the technology will not replace human clinicians. Rather, it will help reduce and manage the workload of radiologists to improve outcomes for breast cancer patients with more accurate screenings. Undoubtedly, AI breast imaging could be a life-saving screening tool — but that will not happen until all women are represented in its algorithms.

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“If we look at Black American women and we even go back to slavery, Black American women were taught to take care of others. We weren’t taught to take care of ourselves,” she tells SheKnows. “We weren’t taught to even know what we needed. If someone were to ask us if we needed help, we weren’t taught what that all looks like.” 

In 2004, Dr. Denyse started a nonprofit organization, Carrie’s TOUCH, with her now-late sister Lynne Rankin-Cochran who battled bladder cancer until her passing in 2013. Their work has brought Black women surviving breast cancer into a community driven by education and advocacy. But the organization wasn’t named after someone with the disease; it was named after her late mother who was killed by her abusive husband when Denyse was just 14 years old. 

“A lot of people think that Carrie, the namesake for the organization, actually passed from breast cancer. She didn’t. She was a sufferer of domestic violence,” Denyse points out. “And I believe, had my mom been empowered to say ‘no,’ A. She would have never gotten into that bad marriage. B, she would have never took the abuse that she took C, she wouldn’t have taken it as long as she took it, and D, it wouldn’t have ultimately taken her life. I knew as a young girl that that would not be my trajectory, and I was determined then, 45 years ago, to have a different outcome for my life.”

Just as lineage sits at the root of her work, so does personal experience. After an admittedly “ignorant and insensitive” reaction to a woman at her church who was receiving chemotherapy for breast cancer, Dr. Denyse was diagnosed with the same disease a year later, getting the news while she was in the car with her three children. “I was more offended that the doctor didn’t receive the fact that I said, ‘No, this isn’t a good time to have this conversation’ than her actually telling me I had breast cancer,” Dr. Denyse says. It was the beginning of a journey that would find her breaking down the ways of Black women’s past even further. 

Carrie’s TOUCH has gathered a bevy of breast cancer resources for Black women on their mobile app, a first of its kind. The app includes educational videos and various other means of support, including free or low-cost therapy, financial assistance, oncologist recommendations and social support through groups in-person and online. The organization also produces a podcast entitled No Longer Silent: Patient Access Stories, which highlights the stories of Black people navigating the healthcare system. Carrie’s TOUCH is also leading the charge in research geared toward Black women with initiatives like Project SOAR, a series of focus groups exploring the relationship between breast cancer and the “strong Black woman” schema through the African concept of “Ubuntu,”meaning “humanity to others”. The non-profit’s multi-pronged approach mirrors the long, winding road towards healthcare equality for Black women.

The statistics for Black women with breast cancer tell a harrowing story; perhaps the most well-known is the death rate for Black women with the disease, which is 41 percent higher than that of white women, per the Breast Cancer Research Foundation. There is also, however, the significant levels of anxiety and depression symptoms that Black breast cancer patients experience, and the glaring disparity in private health insurance and access to quality care. Dr. Denyse is staunch in her efforts to “dismantle the 41 percent,” criticism be damned. “The problem is that the needle hasn’t moved,” she says. “I knew 20 years ago that they weren’t putting the resources into saving Black women’s lives the way they were putting resources into saving white women’s lives.” Detractors have tried to challenge her, but she’s firm in her fight for inclusion where it counts. “When you don’t have adequate representation in clinical trials which inform what type of resources and medications and even policy is available to us, when the data is skewed, it’s missing the melting pot of people that are in this country and it leaves us, 20 years down the road, reciting the same statistic.”

Research has also shown a direct relationship between support and survival. In a study on Black breast cancer patients published in Social Science & Medicine, an important link was made: “Women whose social support declined during the first year after diagnosis reported more severe depressive symptoms and worse general health perceptions at two years.” Dr. Denyse underscores the importance of communal support by turning a popular phrase on its ear. “I have recently started saying, ‘Yeah, black don’t crack on the outside, but if you come on the inside there’s a lot of broken pieces internally.’ I think when we are in community, we get to share the burden.”

Thankfully, there are a number of organizations working alongside Carrie’s TOUCH to reduce mortality rates for Black women with breast cancer. Longtime groups like the African American Breast Cancer Alliance and Sisters Network Inc boast decades of advocacy, while newer organizations continue to enter the space like For The Breast of Us and Touch BBCA (Black Breast Cancer Alliance). Each of these organizations offers specialized community services to Black women with breast cancer, including social support, education, advocacy, and forums for discussion. Through all of their work, Black women’s capacity to go it alone is beautifully challenged. “It’s not until you force people to sit down and you say, ‘Give me two people that you could call right this second, and they’d drop everything and be here with you. That’s your inner circle,’” Dr. Denyse explains. “We hear it all the time when somebody’s sick. ‘Hey? Just let me know if you need anything.’ Most people are waiting on the phone call, but we don’t make it.”

The disparities Black women face are also global and widespread throughout the African diaspora. In a colorful anecdote, Dr. Denyse shares that on a trip to Starbucks before her sister’s passing, they saw a cover image in The New York Times that featured a woman dying from breast cancer on the streets of Sierra Leone. She resolved to take her work to Africa from that moment—a manifestation that found her in Ghana not too long afterwards. On a visit led by Dr. Beatrice Wiafe, Dr. Denyse found herself laying hands on various women, sharing her survival story and letting them know that God has not forsaken them. 

“Now I don’t tell you that story to talk about how great I am. I tell you that story to talk about the fact that we’re having this conversation around Black women with breast cancer. And there’s still a disparity that minimizes our survivorship rates,” Denyse passionately expresses. “We are not present in the research. We don’t have adequate support in community. And it’s because I believe we are not seen as human. Our humanity is not seen, which means you don’t see our need. You don’t have compassion for our pain. You don’t have love, generosity, and all the things that you need to survive this disease.”

A lack of humanity begets a lack of education in many cases. Though most are aware of more popular warnings like the significance of early detection, there are lesser-known facts that many are still learning. For example, if there is a history of breast cancer in your family, medical professionals advise you to start receiving mammograms 10 years earlier than the age your family member was diagnosed. There is also a difference between how you perform a self-exam on your breasts (which should happen regularly) and a clinical breast exam (which should be performed yearly). It’s the kind of information that’s vital for a community facing disproportionate death, and the kind of tips Denyse shares ad nauseam. 

Like every powerful visionary, Dr. Denyse is motivated by the possibility of a better future, as evidenced in her bestselling book, The Power of Hope: Reclaiming Your Life After Tragedy. When asked what she dreams for Black women surviving breast cancer years from now, she draws inspiration from Dr. Martin Luther King’s famous speech at the March on Washington: “I dream that one day black women will survive this disease at the same rates that white women do. I dream of a day where all women are included in research, and there is a diversity minimum that has to be in a part of every single clinical trial that is conducted. I dream of new medications that might need to target Black and brown bodies that are not the same,” Denyse says with a piercing stare and utmost clarity. “I dream of more love and more compassion and more understanding. I dream that people can see Black women and our humanity, and know that we hurt too, and that we deserve love. We deserve to be cared for, we deserve to be able to cry, and not feel guilty or ashamed of it, of the tears.”

She’s careful, still, to leave room for Black women not to be everyone’s savior. 

“And I dream of a sisterhood of support that we can call each other when we need our sister-friends and our sister-friends will be there, and if that sister-friend happens to be on a respite where she’s doing her own self-care. There’s no repercussions. We all need self-care. And if that’s that sister’s time for self-care, she’s not the appointed one for you in this season, and that is okay.”

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Culturally, Black women may be reluctant to seek care, owing to their historical misuse as science experiments for gynecological advances, harvested stem cells without permission and sterilization practiced well into the 20th century. Mistrust leads to delayed diagnosis coupled with “healthcare system biases, and suboptimal care,” Dr. Bodour tells SheKnows. “Additionally, environmental exposures, lifestyle factors, and structural racism play significant roles in increasing risk and negatively affecting outcomes.” Unfortunately, these health disparities are costing Black women their lives.

Younger Ages at Diagnosis

Typically, breast cancer rates in women go up after age 50, with diagnosis in white women spiking between ages 60 to 84. Black women, on the other hand, are more likely to be diagnosed before age 45 compared to women of other races. The type of cancer will dictate treatment and it is imperative that if a knot, mass or lump is felt in the breast or underarm region, an appointment with a healthcare professional is made immediately.

Timing is everything when it comes to cancer. Antoinette Greer, co-founder and CEO of My Sister My Friend, Breast Cancer Support, a survivorship organization, run by survivors in Long Beach, California, learned this when she was 38 years old. Her mammogram detected a mass, but doctors told her it was a calcification and sent her home. Because her mother had breast cancer, she tells SheKnows, she should have advocated for that the fast-growing mass to be moved immediately. Instead, two years passed and Greer developed Stage 3B breast cancer, also known as locally advanced cancer, requiring a modified radical mastectomy, six months of chemotherapy, and twenty-six treatments of radiation.

After beating the odds, she started an affiliate chapter of the Houston, Texas-born Sister Network. “Black women are most comfortable in culturally competent spaces, and our organization offers resources, screening assistance, advocacy, and has presenters from the FDA, breast surgeons, fitness experts,” Greer explains. “We have women at all stages of their cancer journey so they can see where you have been or what’s on the horizon.” That means finding support for everything from the shock of diagnosis to the various griefs that treatment brings. Greer pointed out that losing hair to chemotherapy or radiation, for example, can be especially stressful and scary for a Black woman. First revered as her “crown and glory”, Black hair has been politicized and weaponized by family members, pop culture and the media to simultaneously uplift and demean Black women’s beauty.

Scientific Strides

While Greer is making a difference locally, the scientific community must use their expertise to save the lives of Black women, sooner rather than later. One way to make a difference is by including Black women in cancer research. According to the Journal of American Medical Association, only 2 percent of participants in oncology trials were Black women compared to 84 percent White women, which means that unique cultural and environmental experiences of Black women are not considered when formulating medicine or treatments.

It’s a huge miss, but one that experts are ready to rectify. The American Cancer Society, for example, launched VOICES of Black Women earlier this year, an initiative to obtain data about Black women’s bodies that will improve health outcomes for future generations. Open to Black women between the ages of 25-55 years old who do not have cancer, the goal is to study 100,000 women for the next 30 years to understand this demographic better.

“Fighting For Our Lives”

Another way to increase survivorship is self-advocacy. Dr. Mediget Teshome, chief of breast surgical oncology at UCLA, suggests women start with their primary care provider or gynecologist. “Share your family history about cancer anywhere in your family and consider taking an online risk assessment to get an idea if you are average or high risk,” she tells SheKnows. “This information helps with screenings. And, if your mammogram is normal but you have symptoms, ask for an evaluation.”

This is the path Miriam Ha, a physician assistant in Los Angeles, took in 2022, when her mammogram did not detect a lump in her breast that she herself could feel. She kept checking herself throughout the day but the small pinky-sized lump did not go away. A non-smoker with no first-degree relatives (parent, sibling or child) with cancer, she was told that she was low-risk. An ultrasound later revealed otherwise.

Ha, who had an HMO, was told it would be eight-weeks before she could see the surgeon, whose schedule was full. Unwilling to accept the delay in treatment, Ha reminded the scheduler that the HMO’s policy stated that 14-days from diagnosis was the timeline to implement a plan, which included an MRI to check for metastasis as well as actual surgery. Then, she encountered another delay because the MRI facility she was referred to was also booked.

“I insisted on being sent to one with a space and they found one,” she tells SheKnows. “I pushed because time was of the essence.” Ha made her HMO adhere to their medical treatment policy and ultimately underwent a bilateral mastectomy to decrease her anxiety about complications of reconstructive surgery as well as recurrence. Because removing breasts doesn’t remove the entire risk of cancer recurrence, she also made life changes like retiring from a stressful job, living a clean life, and eating foods high in antioxidants.

Now on the other side, Ha encourages other Black women to find their voices too. “We are literally fighting for our lives,” she says.

Treating Breast Cancer & Reducing Risk For Black Women

Treatment for breast cancer will vary. Not everyone will need a mastectomy, chemotherapy, and radiation or genetic testing. If you have the BRCA gene, a more aggressive form of treatment may be needed, such as a hysterectomy and bilateral mastectomy. Of equal importance is breast cancer in Black men. Dr. Teshome shares, “breast cancer affects men to a lesser degree than women, but Black men are diagnosed at higher rates than white men. Also, a male family member with breast cancer should prompt genetic testing.” She offers a couple of additional tips:

Other ways Black women can reduce breast cancer risk is through a healthy lifestyle:

More broadly, much needs to change to address the concerning trends in breast cancer when it comes to Black women. “Equitable access to quality healthcare, including screenings and advanced treatments, must be ensured,” Dr. Bodour says. “Addressing socioeconomic inequities and combating structural racism within healthcare are crucial for providing fair and unbiased care.” Community outreach, culturally sensitive education to promote earlier detection and healthcare-seeking behaviors, investing in targeted research, personalized medicine, and reducing harmful environmental exposures — all of these will play a role.

It won’t be easy, but ultimately, the tide can turn and disparities in breast cancer outcomes for Black women can be reduced.

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This troubling statistic underscores the critical importance of early detection and appropriate screening for Black women. Here’s what you need to know about breast cancer screening guidelines and how to advocate for your health.

Understanding the Disparity

Several factors contribute to the higher breast cancer mortality rate among Black women. These include later-stage diagnosis, lower survival rates at every stage of diagnosis, and limited access to high-quality cancer treatment. These complex factors are fueled by systemic racism that limits access to high-quality cancer treatment, making it crucial for Black women to be proactive about their breast health.

Navigating Screening Guidelines

In the world of medicine, several leading independent organizations and panels make breast cancer screening recommendations and other cancer care guidelines. These reports can influence insurance coverage and help care providers decide on the best screening schedules for their patients. Two prominent organizations are the ACS and the United States Preventive Services Task Force (USPSTF).

The USPSTF recommends that women aged 40 to 74 get mammograms every two years. On the other hand, the ACS recommends annual mammograms for women ages 45 to 54, with the option to switch to every other year at 55 and older. They also suggest women should have the choice to start annual screening at age 40. To make screening guidelines even more confusing, The American College of Radiology recommends that all women, especially Black women, and women of Jewish descent, consult a doctor as early as age 25 to determine if they’re at a higher-than-average risk for breast cancer.

It’s crucial to understand that these are general guidelines, and your individual risk factors may warrant a different approach. Moreover, it’s important to know which guidelines your healthcare provider follows, as this can significantly impact your screening schedule and overall care.

Types of Screening Tests

The primary screening tool for breast cancer is the mammogram, often described as an X-ray of the breast, considered the best screening method for most women. For women who are at higher risk, breast MRI may be used in conjunction with mammograms. Clinical breast exams, performed by healthcare providers, and breast self-exams are also important components of breast health.

Because you’ve lived in your body your whole life, you are the first person to notice if something has changed, especially with your breasts. You can monitor changes in your breasts by doing a monthly self-exam after your period or on the same day each month if you’ve been through menopause. Each time you want to gently feel your breasts and look for any changes in appearance, such as dimpling, redness, or nipple inversion, and keep track of your findings to alert your healthcare clinician if you notice any changes. Remember, this self-exam complements but doesn’t replace regular mammograms and clinical exams. By knowing your body and increasing your breast self-awareness, you become your best health advocate.

The Reality of Healthcare Interactions

While guidelines often state that your healthcare provider will review the benefits and risks of screening with you to make an informed decision, the reality can be quite different. In an age of fifteen-minute appointments and clinician shortages, these in-depth discussions may not always happen. This makes it vital for you to be informed about screening guidelines and to advocate for the care you believe is best for you.

Furthermore, it’s important to be aware of potential clinician bias. Unconscious biases related to gender, socioeconomic status, race, or ethnicity can impact the quality of care you receive. By being informed and proactive, you can help ensure you receive appropriate and timely screening, regardless of these potential barriers.

Taking Control of Your Health

Given the disparities in breast cancer outcomes for Black women, it’s crucial to be proactive about your health. Start by knowing your risk: – discuss your personal and family history with your healthcare provider, including if genetic testing is recommended. However, it’s important to remember that over 85 percent of breast cancer cases occur in women with no family history of the disease, per research. This underscores the importance of regular screening for all women, regardless of family history.

Don’t hesitate to advocate for yourself. If you’re not satisfied with your current healthcare provider’s approach to breast cancer screening, seek out a provider who will listen to your concerns and tailor recommendations based on your risk of developing breast cancer. Remember, you have the right to request additional screening if you have concerns.

A Call to Action

As a Black woman, your health deserves priority. Don’t let systemic barriers prevent you from receiving the care you need. Stay informed about the latest guidelines and research on breast cancer screening. Knowledge is power, especially when it comes to your health. 

Take action today: 

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Black women are more likely to die of breast cancer, with a 38 percent higher death rate than white women, according to a recent study. They’re also likely to be diagnosed with later-stage breast cancer, including metastatic breast cancer, and at a younger age, Dr. Christopher McGreevy, associated chief of breast surgery at the Hackensack University Medical Center, tells SheKnows.

The disparity is significant and concerning, with many factors coming into play, from systemic racism and discrimination to healthcare access. When it comes to breast cancer treatment and prevention, knowledge is power, which is why SheKnows spoke with Dr. McGreevy to explore what it means to have metastatic breast cancer, why Black women are at higher risk, and — most importantly — what they can do about it.

What Is Metastatic Breast Cancer?

Metastatic breast cancer or stage 4 breast cancer is “a type of cancer that originated in the breast and has spread to other parts of the body,” Dr. McGreevy explains. The cancer can spread through the bloodstream or the lymphatic system to anywhere in the body, and it’s most common for breast cancer to spread to the bones, lungs, liver, and brain, Dr. McGreevy says.

Metastatic breast cancer is a late-stage cancer, which means it’s considered incurable with a low chance of long-term survival. However, “it can be treated to help control the disease and improve the quality of life for patients,” Dr. McGreevy notes. Those treatments might include surgery, chemotherapy, radiation therapy, hormone therapy, and targeted therapy.

More Common in Black Women

Research has found that Black women are more likely to be diagnosed with advanced breast cancer and at a younger age, along with having a worse survival rate. In fact, when compared to white women, Black women are twice as likely to be diagnosed with triple-negative breast cancer, an aggressive type of cancer more likely to be found when it’s already spread to other parts of the body.

This stark disparity “is complex and multi-faceted,” says Dr. McGreevy, who noted several different contributing factors.

Access to healthcare: Since early breast cancer doesn’t typically show any symptoms, regular screenings are crucial to catching it before it progresses. But issues of cost and disparities in health insurance coverage translate to limited access to screenings and early detection for Black women, Dr. McGreevy says. According to a 2024 analysis by KFF, Black people were 1.5 times as likely to be uninsured compared to white people, and studies have shown that uninsured people are more likely to see cost as a barrier to getting a mammogram.

Poverty: Black women are disproportionately affected by poverty, according to 2020 data from the Center of American Progress: while Black women make up just 12.8 percent of the total population of women in the US, they represent 22.3 percent of women in poverty. And while poverty represents a financial barrier to getting regular mammograms, it also contributes to the healthcare disparity in other ways, leading to “food insecurity, lack of access to healthy foods, and limited access to quality healthcare” in general, Dr. McGreevy explains.

Racism: Black women are more likely to report being treated unfairly by a health care provider due to their race and ethnicity, according to a 2024 KFF survey. Because of that bias and discrimination, 34 percent of Black women who used health care in the past three years reported that a negative experience with a healthcare provider resulted in worse health, being less likely to seek care, and/or switching providers. When it comes to breast cancer, this kind of discrimination and distrust of healthcare providers can lead to delayed diagnosis and treatment.

Genetics: While Black women have similar rates of breast cancer-related genetic mutations compared to white women, they do have a higher prevalence of BRCA1 and BRCA2 mutations. People with these mutations have a higher risk of developing several cancers, including breast cancer and ovarian cancer, according to the National Cancer Institute.

Lowering Your Risk For Breast Cancer

Tackling the disparity in breast cancer outcomes won’t be simple, Dr. McGreevy says. “I’m an advocate of allocating more resources to research on the biological and social factors contributing to breast cancer disparities,” he explains. “This includes funding for studies on genetic risk factors, tumor biology, environmental exposures, and social determinants of health, specifically looking at treatment differences in different populations.” Also important: expanding access to healthcare and addressing implicit bias in healthcare settings.

On an individual level, though, what can you do to lower your breast cancer risk? While you can’t change any genetic risk factors, you can get tested to see if you have any mutations that put you at risk, which Dr. McGreevy especially recommends if you have a family history of breast cancer. On top of that, Dr. McGreevy says there are several lifestyle factors that put you in the best position to stay healthy and cancer-free. They include:

Maintaining a healthy weight, as obesity is a risk factor for breast cancer.

Staying active. Dr. McGreevy recommends aiming for at least 150 minutes of moderate-intensity exercise or 75 minutes of vigorous exercise every week.

Limit your alcohol consumption. Studies have found that “excessive alcohol consumption increases the risk of breast cancer,” Dr. McGreevy notes. He suggests limiting your alcohol intake to no more than one drink per day, but the lower the better, according to recent research.

Quitting smoking, which Dr. McGreevy says is the most important thing you can do to reduce risk. “Smoking increases the risk of many types of cancer, including breast cancer,” he explains.

Eat a healthy, balanced diet. “Choose a diet rich in fruits, vegetables, whole grains, and lean protein. Limit processed foods, sugary drinks, and unhealthy fats,” Dr. McGreevy says.

Get regular mammograms. Women should get yearly mammograms starting at age 40, but you should also talk to your doctor to see if your individual risk factors warrant earlier testing.

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The role of systemic racism and sexism cannot be ignored in understanding these disparities. Social and economic factors, often influenced by systemic racism, can create barriers to timely, high-quality healthcare. Moreover, the constant experience of racism and discrimination leads to chronic stress, or “allostatic overload,” which can have real, physical impacts on health outcomes.

Black women face a different experience in the healthcare system. While all women may encounter dismissal when seeking care, for Black women, this dismissal is often compounded by both racism and sexism. This increases their risks for delayed diagnosis and reduces their chances of accessing or being offered crucial screenings like mammograms. The dismissal of their health concerns can lead to serious consequences, particularly in the context of breast cancer where early detection is critical.

Further complicating matters, Black women are often labeled as “strong” and “resilient” — stereotypes rooted in racism. These portrayals, while seemingly positive, can lead to harmful bias in the care received each time they seek medical attention. Healthcare providers might underestimate or dismiss their pain and concerns, operating under the misguided assumption that Black women can “handle” more pain or don’t need as much care. This stereotype-driven bias can result in inadequate treatment, delayed diagnoses, and poorer health outcomes.

The Harsh Reality

Black women face a disproportionate burden when it comes to breast cancer, particularly metastatic breast cancer. The statistics are sobering: Black women have the highest breast cancer mortality rate among all racial and ethnic groups, facing a startling 40% higher mortality rate compared to their White counterparts. This disparity exists even in the earliest, most treatable stages of the disease.

One of the most perplexing aspects of this disparity is that despite having higher screening rates, Black women are often diagnosed with more advanced stages of breast cancer. This finding uncovers deeper issues within our healthcare system. Adding to this complexity, Black women are more likely to develop aggressive forms of breast cancer, such as triple-negative breast cancer, which are harder to treat.

Metastatic breast cancer, where the cancer spreads beyond the breast to vital organs like the lungs, brain, liver, or bones, is especially concerning for women of color. What’s particularly troubling is that this metastasis can occur months or even years after the initial breast cancer diagnosis, underscoring the need for ongoing vigilance and follow-up care. This continuous care is crucial but often overlooked in discussions about breast cancer disparities.

Addressing Disparities

To address these disparities, we need a multifaceted approach. Enhancing access to early screening and high-quality healthcare is crucial, as is tackling the socioeconomic issues that contribute to delayed diagnoses. Increasing representation of women of color in breast cancer research is also vital to ensure that treatments and interventions are effective for all populations.

Cultural competence in healthcare is another key area for improvement. We must ensure that healthcare providers are culturally and linguistically competent regarding potential risks specific to Black women. Additionally, addressing the mistrust that continues to be prevalent in the Black community due to historical and ongoing medical injustices is essential for improving health outcomes.

A Call to Action

Achieving breast health equity isn’t just about equal access to mammograms. It requires a comprehensive approach that addresses the complex interplay of social, economic, and healthcare factors, including the quality of care received and the cultural competence of healthcare providers.

As women, we need to stand together, demand better, and support each other in the fight for equitable healthcare. By understanding these disparities, we can work together to close the gap and ensure that every woman has the best possible chance in the fight against breast cancer, regardless of her race or ethnicity.

Remember, knowledge is power. It’s time to break the silence and take action to ensure that all women have the best possible chance at survival and quality of life in the face of breast cancer.

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What the Data Reveals

A study published in the Journal of Clinical Oncology revealed that Black women are 40 percent more likely to die from breast cancer compared to white women, despite similar diagnosis rates. The study also showed that this disparity exists across all breast cancer subtypes, including the most treatable ones. For the most common subtype (HR-positive, HER2-negative), Black women were 50 percent more likely to die than white women. Even for triple-negative breast cancer, which is more common in Black women but more deadly across the board, there was still a 17 percent higher mortality rate compared to white women, the study revealed.

It’s important to note that being Black, which is a social construct, doesn’t inherently increase the risk of developing breast cancer. The disparity in outcomes is also not due to genetics or biology, but rather a complex interplay of social, economic, and systemic factors including access to healthcare, delayed diagnoses, lack of health literacy, systemic racism in healthcare, and socioeconomic factors.

One surprising finding was that the disparity persists even in more treatable types of breast cancer that require long-term hormone therapy. This suggests that factors such as financial barriers, transportation issues, and potential bias in treatment recommendations play a significant role.

Taking Action

Black women tend to be diagnosed with breast cancer at younger ages and often at more advanced stages. Metastatic breast cancer, where the cancer spreads beyond the breast to vital organs like the lungs, brain, liver, or bones, is especially concerning for women of color. The statistics are sobering: Black women have the highest breast cancer mortality rate among all racial and ethnic groups. This is partly because they’re more likely to be diagnosed with advanced-stage breast cancer compared to white women.

Early detection is crucial in breast cancer treatment, but unfortunately, women of color often don’t receive diagnoses as early as other groups. That makes it even more vital for Black women to proactively schedule regular mammograms and screenings. The recommended age to start annual mammograms is 40 years old, or earlier if you have a family history. If you have a first-degree relative (parent, sibling) who had breast cancer, start screenings 10 years before their age of diagnosis.

Understanding your risk factors and family history are key. Yet your family history may not provide the full picture, as 85 percent of breast cancer patients have no family history of the disease, per the educational site Breastcancer.org. Hence, the importance of being vigilant about screenings and self-examinations, looking for any changes in your breasts including, new lumps or masses, changes in breast size or shape, skin changes (dimpling, redness, or scaling), or nipple discharge or changes.

If you are concerned, don’t hesitate to ask your healthcare provider for screenings or additional tests. Also, seek a second opinion if you feel your concerns aren’t being adequately addressed.

Closing the Gap

While these disparities are deeply concerning, it’s important to remember that they can be overcome. As the study’s lead author, Erica Warner, noted, these disparities have emerged over time, which means they can also be eliminated with focused effort and systemic changes.

As a community, we must continue to advocate for increased representation of Black women in clinical trials, push for better access to quality healthcare for all, and address social determinants of health like transportation, childcare, and healthy food access. Additionally, continued education of healthcare providers about potential biases and the importance of offering all treatment options to all patients could greatly improve patient outcomes.

By raising awareness, advocating for ourselves and our community, and pushing for systemic changes, we can work towards closing this gap and ensuring better breast cancer outcomes for Black women.

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With Black mothers being less likely to initiate breastfeeding than other racial/ethnic groups, it’s essential to present breastfeeding as a viable option for feeding their babies.

Breastfeeding Benefits

Breastfeeding is one of the most effective ways to ensure a child’s health and survival, according to the World Health Organization. The organization notes that breast milk is safe, clean, and contains antibodies to help protect against many common childhood illnesses and allergic disease. Breast milk provides energy and nutrients an infant needs for up to two years, adapting to the child’s changing needs. It is also inexpensive, and helps establish a strong emotional bond between mother and child.

Mothers who breastfeed also have a reduced risk of breast and ovarian cancers, according to WHO.

History, Myths, and Marketing

Yet, despite the many benefits, Black mothers are opting out of breastfeeding.

The history of Black moms during slavery as well as aggressive marketing of formula may have contributed to the disparities and the stigma around breastfeeding in the Black community. During slavery, Black women were often forced to nurse, or wet nurse, the children of their enslavers, which left little milk for their own children. Additionally, Black mothers were unfairly seen as savages, cold, and incompetent, which influenced how they were portrayed in popular media, as discussed in WBUR’s excerpt from the book Skimmed: Breastfeeding, Race, and Injustice by Andrea Freeman.

Formula campaigns also heavily targeted Black mothers, with virtually no breastfeeding representation for Black women. These race-based marketing campaigns touted the convenience of formula, which appealed to working Black mothers and kept them in the workforce.

Black women also may lack access to supportive environments for breastfeeding, such as workplace accommodations that allow for pumping milk. These factors might have contributed to creating a community where formula feeding was seen as the norm.

The cultural stigma around breastfeeding can be a significant barrier as well. When exploring breastfeeding as an option for my own children, I was met with intense scrutiny and concern from family and friends who had exclusively used formula to feed their children.

The Best Way to Feed Your Baby

As a physician and mom, I’m here to tell you that figuring out the best way to feed a baby is ultimately the mother’s choice, and that choice should come with no judgement. Both options should be presented to Black mothers as acceptable ways to feed their children and provide the necessary nutrients they need.

Formula is convenient and can ensure that a child is getting a specific amount of calories. It also allows both parents to be a part of the bonding process while feeding. For babies that are allergic to their mother’s milk or adoptive parents with newborns, formula provides vital nutrition.

No mother’s situation is the same, nor should they be made to feel guilty or ashamed of their choice.

Closing the Gap

To address the disparity and improve outcomes, clinicians should present Black mothers with information about all feeding options including breastfeeding and formula. Black mothers should also be given access to lactation nurses after birth, at the same rate as their peers, to provide them with support and guidance and help alleviate fears.

For working Black mothers who are expecting and considering breastfeeding, read up on the law around workplace accommodations for pumping breastmilk. Review federal and state employment laws and talk with your employer about your scheduling needs.

As a community and “a village,” let’s work together to provide a positive support system, resources that include breastfeeding literacy, and all feeding options to help Black mothers and babies thrive.

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Recently, Scott donated a $2 million grant to the Birthing Beautiful Communities, which is a doula program in Ohio dedicated to Black mothers, babies, and families.

BBC’s President & CEO, Jazmin Long said, via Black Enterprise, “We’re overjoyed and deeply grateful for this transformative gift from MacKenzie Scott’s Yield Giving Open Call. This generous support propels Birthing Beautiful Communities into an exciting new chapter, empowering us to amplify our impact and further our mission of ensuring every mother, baby, and family receives the care and support they deserve.”

Long added, “With this funding, we’re poised to continue transforming maternal health outcomes in Northeast Ohio and beyond, ushering in a future where every birth is a beautiful and healthy experience.”

BBC provides families by helping mothers through the pregnanct, labor, and helping with the first year of the baby’s life.

The CDC revealed over 80 percent of maternal mortality deaths are preventable, and after Roe v Wade was overturned, it’s only worsened. The organization found that the group most affected by maternal mortality is Black people, saying “Black women are three times more likely to die from a pregnancy-related cause than White women.”

The reason behind this varies, with the biggest issues with lack of quality healthcare, structural racism, and implicit bias, to name a few.

Per Kiplinger, after Scott landed a $38 billion settlement from Bezos, it made her the richest woman in the world. As of 2024, she has given away at least $650 million, gifting $1M to $2M to over 360 nonprofit groups. Along with helping maternal mortality rates decrease, she has donated money to arts, education, affordable housing, public health, and more.