Jasmine Souers was 25 when she noticed a discharge from her nipples. Concerned, she went to get it checked out. At first, her doctors dismissed the possibility of breast cancer, saying, she's "too young."
She didn't feel any lumps. A mammogram -- a type of breast X-ray -- and an ultrasound -- a scan that uses sound waves -- didn't show any signs of cancer. Her doctor thought the discharge was caused by an infection and gave her antibiotics.
Six months later, Souers went to an OB/GYN. The Jacksonville, FL, native was 2 years into her marriage and was considering starting a family. But she was adamant about the discharge, which at this point, had become bloody.
"I said 'I really think we need to check this out before we go any further,'" Souers says. After the doctor referred her to a specialist, a breast MRI confirmed multiple tumors and stage I breast cancer.
"It was a chaotic time," Souers recalls.
Souers is one of the many Black women who are under the age of 45 and disproportionately more likely to get breast cancer in the U.S.
"There are a number of disparities around breast cancer that are really sobering in terms of why outcomes for black women are significantly poorer than for white women," says Dorraya El-Ashry, PhD, chief scientific officer at the Breast Cancer Research Foundation.
Breast cancer is the second leading cause of death among women in the U.S. It affects 1 in 8 women, and 1 in 39 women die from this disease.
Breast cancer numbers have begun to fall in the last few years due to better treatments and early detection. But they're still high for Black women compared with white women.
While research shows that white women are more likely to get breast cancer than any other race, the death rate for Black women is 40% higher.
Black women are also more likely to get cancer earlier in life and twice as likely to be diagnosed with aggressive forms of cancer like triple-negative breast cancer.
Black women are also more likely to be diagnosed with late-stage breast cancer than white women.
What's Behind the Racial Gap?
Research shows that poverty, social injustice, and structural racism may play a large role in the different ways breast cancer affects Black and white women.
Regardless of race, women with low incomes are less likely to have regular health screenings, treatments, and follow-ups. Research shows that more women of color, especially Hispanic and Black women, live in poverty than whites.
Lower income can affect access to health insurance and good quality health care. When you're struggling financially, you also might not be able to keep up with a healthy diet and lifestyle. Tobacco use and obesity, for example, can raise your chances of getting breast cancer.
El-Ashry says genes may play a role, too. She says that research shows that Black women are more likely than whites to have BRCA1 and BRCA2 mutations -- changes in genes that make you more likely to get breast cancer.
Experts say Black Americans also tend to have a higher level of mistrust in medical authorities. This usually stems from a legacy of the discrimination and racism the community has faced in the past.
Lack of 'Representation' in Breast Cancer Community
Finding a community that you can relate to is sometimes an issue for Black women with breast cancer. Souers found this to be true when she was seeking information about surgery.
After her breast cancer diagnosis, Souers says she was looking for the "path of least resistance" to make sure the cancer wouldn't come back. She chose a bilateral mastectomy. In that procedure, a surgeon removes both breasts.
Before the surgery, Souers was curious about how her breasts would look afterwards. When she ran a simple Google search to see what Black women with bilateral mastectomy look like, mostly images of white women turned up.
"My antennas go up. So, are Black women not getting double mastectomies? Are they having bad doctors? Are my doctors asking me to do something other Black women aren't doing? All of this made me anxious," Souers says.
Marissa Thomas, a 41-year-old from Tacoma, WA, had a similar experience after she was diagnosed with stage II breast cancer in November 2015. The following year, she had to go through "the whole gamut of treatment" -- a lumpectomy (removal of part of breast), chemotherapy, radiation, and two breast reconstruction surgeries.
During that trying time, Thomas says she "didn't see anybody that … looked like me that was going through treatment. I knew that they were out there, but just trying to connect with them and have an online support group -- there just wasn't any out there," Thomas says.
But thanks to the internet, Thomas and Souers connected with each other online on Instagram. Later, the two met in-person at a meeting, where they realized they had a lot in common. Sensing a lack of community for women of color with breast cancer, the two women co-founded a group called For the Breast of Us.
The group's mission, Thomas says, is to uplift and empower women of color with breast cancer with the tools necessary to advocate for themselves as they navigate the bumpy medical journey. Today, the group's private Facebook page has over 700 members who look to the community for advocacy, support, and empowerment.
Low Participation in Clinical Trials
One of the core missions at For the Breast of Us, Thomas says, is "wanting to know why a lot of women of color aren't part of clinical trials" when it comes to breast cancer.
Clinical trials are studies that let scientists learn about how well new treatments work. It's another area where Black women's representation is sharply lower than white women.
"They [Black women] have fewer opportunities to participate in clinical trials, and they participate less in clinical research and other kinds of research," El-Ashry says.
Black people make up only 6.2% of participants of clinical trials, Asians 3.3%, Hispanics 2.2%, and Native Americans 0.1%.
"I think like everything else, it's a complex picture. In clinical trials themselves, if people have poor health because of co-morbid [underlying] conditions, they're less likely to be enrolled in a clinical trial. And since there is a bigger proportion of that in the Black breast cancer community, that can lead to that," El-Ashry says.
El-Ashry says it's also an issue of awareness. "Awareness of the importance of clinical trials and even the opportunity to be, for example, at the scene, at a place that's involved in clinical trials. So, it's about the level of access and representation."
Changing the Approach
Current guidelines say women between 45 and 54 should get a mammogram every year to check for breast cancer. Women 40 to 44 have the option to have a scan every 2 years while those older than 55 can choose to continue the scans each year or opt for every 2 years.
If you have family history or genetics that increase your risk of breast cancer, talk to your doctor about getting an MRI along with the mammogram. Since women of color are diagnosed with more aggressive cancer at later stages, El-Ashry says researchers are checking to see if there are benefits to modifying the screening guidelines. One new study wants to find out if screening guidelines should focus more on whether people have specific risks for breast cancer, rather than your age.
"I think that is definitely an area that the field is moving into with the idea that if we could understand your risk, then we would come up with guidelines to go with that risk," El-Ashry says.
Open Up Communication
Thomas says doctors can help close the racial gap in breast cancer care by paying close attention to the needs of women of color.
"Listen to your patients, especially your Black and brown patients," Thomas says. "I don't think a lot of providers are fully listening to their patients. They're not aware of where they may be falling short."
Thomas also says doctors could also consider connecting their patients with other patient advocates or patient navigators within their community. This is so that they have somebody that they could fall back on in case they just can't relate to their medical providers or they just want somebody to break it down to them in layman's terms."
"One thing I want to say to the medical community is checking their biases at the door. We all come with biases, but make sure that you're not taking that into the care of the patients that you're serving," Thomas says.
Souers says it also takes allies in the breast cancer community who don't identify as women of color to use their privilege and platform to call out the injustices happening to women of color with breast cancer. Through their advocacy effort, Souers and Thomas created an accomplice guide -- a list of dos and don'ts to elevate and amplify the narratives of women of color in the community and share access to resources to care and information that they may otherwise not have.
Closing the Gap
Over the last 30 years, research has helped lower the death rate in breast cancer by about 40%. But this has largely benefitted white women in the community.
"What we need is to be able to have that affect this gap in disparities here, and so that will come from research and that will come from deeper investments in disparities research, and again, that takes money and will," El-Ashry says.
The racial gap is devastating communities of color. Souers says it's about doing everything to at least level the playing field.
"At some point it's like, what are we going to do? Women are dying. We can't tell you how many friends we've lost in the last couple of months. Women are dying. They deserve better. Their parents, their children, their partners -- they deserve better. And we need to have some conversations to actually put a plan in place that we can make it so that if we are dying, at least we are dying at the same rate. Not far out exceeding everyone else," Souers says.