Until the summer of 2019, when she found a lump on her breast, Adrienne Jordan hadn’t given much thought to breast cancer screening.
“I was 44 at the time,” she said of that day. “I hadn’t even had my first mammogram. I found the lump as I was putting on a sports bra. I found out I had cancer at my first screening.”
When Jordan, who is Black, began treatment for her Stage II breast cancer at the Mayo Clinic, she looked around. What she saw — or didn’t see — set her back.
“I rarely saw any Black women there,” she recalled. “I thought, ‘Are we not getting sick? That can’t be the case.” She asked herself why there weren’t more women who looked like her in the waiting rooms and treatment centers: “Is it access to resources? Is it money? Are we choosing not to get treated?”
Jordan’s timely detection and treatment helped cure her cancer — and inspired her to help other African American women get screened and treated. She knew from her own experience that when detected early, most breast cancers are treatable. But for a number of reasons, including the fact that their cancers tend to get detected at later stages, Jordan also knew that Black women’s breast cancer fatality rate is 40% higher than it is for white women.
With breast cancer in her rearview mirror, Jordan felt determined to do what she could to change this reality for other Black women. The mortality gap, she said, “is just unacceptable.” She believed that her own outcome was good because she had advantages: “I got a lot of help. I was fortunate enough to have good health care and access to screening and treatment that saved my life. But that’s not the case for everyone.”
Because early detection was key to her successful treatment, Jordan felt determined to do what she could to help others. “I asked myself, ‘Is there anything I can do to help women who look like me really make sure that they are there at the beginning?’ Because when women start screening early enough they can go on to live a long life.”
A key connection was made a few years ago when Jordan, a strategic planning consultant, volunteered to work on a project for Firefly Sisterhood, a Twin Cities-based nonprofit that provides one-on-one support for women facing a breast cancer diagnosis through mentorship with a breast cancer survivor.
She met Kris Newcomer, Firefly’s then-executive director. For some time, Newcomer, who was approaching retirement, had been focused on trying to bring more women of color into the organization. As the two discussed Firefly’s struggle to attract Black clients and mentors, the conversation turned to the alarming gap in mortality rates.
“Kris got involved because she had been leading an organization that was trying to bring awareness and make sure people had mentors that were women of color,” Jordan said.
The two women agreed to work on something that was eventually named the Breast Cancer Gaps Project, a community-based campaign focused on reducing breast cancer mortality for women of color. The project, Newcomer said, “is something that desperately had to be done.” And with Jordan in a key leadership role, she’s hopeful that it will have a significant impact.
“Adrienne is an ideal person to take a significant role in this project,” she said. “Her lived experience — combined with her connections and professional expertise — helps bring this message to the right audience.”
‘Authentically’ leading the charge
Newcomer knew from the start that in order for this campaign to have true impact on its target audience, it had to be led by Black women. While she’d been kicking around the idea of this kind of project with her friend and colleague, public health consultant Pat Koppa, for some time, she knew that as two white women they had to step aside and let Black women take the helm. They worked behind the scenes to secure funding and create a solid foundation for the group.
Jordan supports this approach. “It is wonderful that two white women have this as a passion and have the resources and the experience to bring all of these things together,” she said, “but it’s important to emphasize that this project is very much led by a team of Black women. It is something that we own and is authentic to our community.”
In early planning conversations, members of the Breast Cancer Gaps Project community co-design team discussed issues that they believed may contribute to higher breast cancer mortality for Black women, including transportation barriers, poor child care access, limited health insurance, or discomfort with mainstream medical systems.
Eventually, the team settled on a multiphase project that kicked off with a survey of 100 Black women in the Twin Cities. The survey, which attempted to understand why Black women get mammograms at lower rates than other racial groups, uncovered three key motivators:
- A fear of mammograms themselves, and also of cancer and death.
- Confusion around basic information, including, Newcomer explained, “’How do I get insurance?’ ‘How do I get an appointment?’ ‘Do I need a referral?’ ‘What age do I start?’”
- A lack of urgency around breast cancer.
With this knowledge in hand, the team designed a campaign focused on education, on inviting Black women into the conversation and spreading the word about the importance of breast cancer screening through trusted “community front door” institutions like churches and hair salons. “We want to partner with community organizations so we can get the word out about breast cancer screening in places that Black women trust,” Jordan said.
When people have discussions about difficult topics in places of comfort, Jordan explained they are more likely to trust the messenger. This also meant that as a caring member of the African American community, Jordan needed to get out there and tell her own story. She hoped learning about her journey with breast cancer would encourage other women to get screened — and stay alive.
“I am using my voice to spread the word,” Jordan said. Though she didn’t set out to tell her story to the world, she said she’s found that sharing her experience with other women can make a difference: “After spending the greater part of this first year talking with our families and friends and other Black women in our networks to understand more about their experience with breast cancer screening and treatment, we’ve learned that telling our stories has a powerful impact.”
The next step: Education
Because their survey revealed respondents’ fear and confusion about mammography, Breast Cancer Gaps organizers set out to demystify the procedure, to educate their target audience by recording video interviews with Black medical professionals and Black women who can talk about their own experience.
To do this, they’ve developed the We Matter campaign, a series of video messages created by and for Black women that encourage breast cancer screening through honest conversation with an emphasis on the importance of taking care of themselves and their loved ones.
They enlisted the help of Lashonda Soma, an African American radiologist and Breast Cancer Gaps community co-design team member, who agreed to appear in a series of explanatory videos about the mammography process. The videos, which are still in production, will feature a community leader who walks through the process of getting a mammogram and shows how quick and relatively painless the procedure actually is.
The team’s videos are available on the Breast Cancer Gaps Project website and on the group’s YouTube Channel. The educational material has a hopeful, proactive message, Jordan explained: The goal of the campaign is to encourage Black women to prioritize self-care and to realize the important role they play in the larger community.
Jordan said she understands why fear may cause some women to put off routine breast cancer screening, but she hopes that the message her team is emphasizing will help some women get past that. “We don’t want to instill any more fear than might already be out there,” she said. “We want to keep it light and hopeful. We want to emphasize that only 10% of lumps that are found are cancerous.”
Take it from a breast cancer survivor, Jordan continued: “Please go get screened and have a good understanding of what’s going on in your body. That’s your best chance possible for a healthy, long life.”