Filling in the Gaps: Breast Cancer and Black Women
Sheena Pruitt felt lumps in her breasts, yet she had to push her primary care physician to order a mammogram – despite her family history of cancer.
Pruitt found out that she had stage 2 breast cancer in March 2021, almost four months after she initially brought up the concern and was dismissed by her doctor at Fairview.
“I found my lump, and I had to really argue with my doctor to order a mammogram,” Pruitt said. “I went back a second time asking for it because I noticed the lump was getting bigger, and she was like, ‘No, I still think it’s dense breast tissue,’ and I was like, ‘Nope. If you don’t order a mammogram, I’m gonna need a second opinion.’”
But how would that situation pan out for someone who couldn’t make a second trip to the doctor’s office? For someone who couldn’t afford another co-pay or didn’t have the skills to advocate for themselves when a doctor disagreed with them?
In Minnesota, breast cancer is among the top five causes of death among women. It affects Black women at higher rates, with Black women with breast cancer in the U.S. facing a 40% higher mortality rate than white women.
“That certainly is very jarring. Unacceptable with all of the resources that we have and all of the treatments that we have currently for breast cancer,” said Dr. Damé Idossa, an assistant professor in the Division of Hematology, Oncology and Transplantation at the University of Minnesota.
The higher likelihood of death is due to a wide range of factors, mostly pointing to the socioeconomic barriers and social determinants of health – meaning the underlying systematic reasons why someone’s health may be struggling.
The disparities have been widening throughout the years, Idossa said.
“In the 1980s, we had the advent of screenings, mammograms and endocrine therapy, which we use a lot for breast cancer,” Idossa said. “Due to a lot of structural barriers, there was differential access to these modalities between races. That essentially started widening the mortality gap because Black women didn’t have access to these things.”
Gaps in insurance coverage or financial ability can be a significant factor in disparities. Another potential cause could be the lack of Black participants in clinical trials. In the U.S., most breast cancer clinical trials don’t reflect the entire population.
Idossa is working on increasing the enrollment of Black women in those clinical trials that often have the newest treatments, which ultimately leads to more people of those backgrounds being able to consider the treatment as a viable option, Idossa said.
“When I am seeing a patient, a Black woman in my clinic, and they’re asking me, ‘Is this applicable to me?’ Meaning, are the findings generalizable?” Idossa said.
Even with almost equal screening rates, the outcomes for Black women are worse. To explain that divide, Idossa pointed to studies showing how stress from systematic issues affects a Black person’s body.
“The biggest thing is just systemic issues within our society, within the health care system that really leads to these poor outcomes,” she said. “There is a lot of weathering that happens on an individual that exists as a Black body in the U.S., and over time that chronic level of stress and systemic racism really gets under the skin and the social context and the accompanying stress that comes with systemic racism can lead to poor outcomes.”
Idossa wants to improve those outcomes, and so do others, like Reona Berry, the president of the African American Breast Cancer Alliance, Inc (AABCA).
Berry is a breast cancer survivor herself.
“We started in 1990 because there was no information about breast cancer for Black women,” Berry said. “When we went to support groups, we found that we were probably the only Black person in the room with breast cancer. We just thought we couldn’t be the only ones that have been diagnosed with breast cancer.”
Need for support
The alliance works to help share information about breast cancer and increase detection, knowledge, and emotional and social support for survivors as they go through their journey.
Pruitt had leaned on the organization back in 2006 when she was diagnosed with Ewing Sarcoma, a type of cancer that generally affects white adolescent males.
At the alliance, she felt a sense of belonging.
“As a dimension of diversity, your race comes through first, right? Those visual dimensions are what’s most apparent, she said. “Being able to go into a space with the AABCA ladies and knowing that like, we all at least have two things in common: cancer and our race.”
Knowing a person’s family history is one of the essential keys to catching certain types of breast cancer. But not everyone has the ability to know that.
“(Early knowledge about family history) is extremely important,” Idossa said. “If your mom was diagnosed with breast cancer and she knew that she had this genetic mutation that led to it, then that person’s family members can undergo screening a lot earlier, and they can sometimes undergo risk-reducing surgeries to try and prevent their incidence of developing breast cancer.”
While science has advanced to the point where testing can be done early on, providers also need to reach a point where their unconscious biases don’t stop patients from receiving proper care.
“I can make assumptions about why she (her doctor) wouldn’t order my mammogram, and I think those assumptions are right. I legitimately have questions like, ‘Why didn’t you?’ I am a cancer survivor that has cancer rampant in her family,” Pruitt said. “When she thinks of breast cancer, she thinks older white woman.”
Lack of inclusion
Pruitt said getting involved with breast cancer organizations is challenging because many of them don’t recognize the specific challenges Black women face or even don’t try to cater their support to the people the disease is affecting.
“When I first got diagnosed, I knew I would lose my hair. They handed me this like folder full of resources, one of the resources was a wig pamphlet. Let’s say there were 20 pages filled and 60 wigs on there. There was only one of the most horrendous old Black church lady wigs I’ve ever seen in my life. I literally threw it away on my way out of the oncology center,” said Pruitt.
The pamphlet was from a major health organization, so she was left wondering why the pamphlet did not represent the reality of who cancer affects, and more often kills.
“When you think of breast cancer, because of what media portrays, it’s often white women that are portrayed. And when it comes to the disparities, Black and brown women are being diagnosed younger than 40 and have a higher mortality rate,” she said. “That pamphlet is from the American Cancer Society. If anyone has statistics on the number of Black and brown women that are diagnosed with cancer every year, they should.”
Seeing the divide between how Black cancer patients and others experience the support given by larger organizations led Pruitt to begin advocacy work with AABCA. She’s spoken on various panels, sharing her experiences, and then has led training on topics like living single with cancer.
“The face of breast cancer doesn’t look like me right now, and I really want people to understand and to see it is under 40 Black and brown women who are being affected by this,” she said.
Looking with hope
Efforts like the Breast Cancer Gaps Project and Gilda’s Club, are two sources of hope, Idossa said. So are individual activists like Pruitt, who now shed light on the disparities and discrimination.
Pruitt’s later diagnosis made her want to be an activist for other women of color experiencing breast cancer.
“While it’s definitely isolating, it also like sparks a fire. This is why I need to get into the advocacy work,” she said. “It lights a fire under my ass to be like, ‘You need to get out there. You need to tell more people.’ This is the face of breast cancer.”