October is Breast Cancer Awareness Month, and while everything in sight tends to be bubblegum pink, there is a stark absence of color when it comes to breast cancer research. According to the American Society of Clinical Oncology Journal, “only 4%-6% of trial participants are Black, and 3%-6% are Hispanic, despite representing 15% and 13% of people with cancer, respectively.” One can surmise that if there is such little representation in clinical cancer research, there is likely to be equally low numbers of representation when it comes to supporting Black and Brown women diagnosed with and fighting cancer.
For The Breast of Us (FTBOU)
For The Breast of Us is the first online community for women of color with breast cancer and was founded by self-proclaimed “Breast Cancer Baddies” Marissa Thomas and Jasmine Souers in 2019. Their sole mission: “create a safe space for women of color diagnosed with breast cancer, and reinforce that they are not alone.” Marissa was diagnosed with Stage II breast cancer in 2015 and underwent a lumpectomy, chemotherapy, radiation, and two reconstructive surgeries before graduating to survivor/baddie status.
But to whom much is given, much is required, and as soon as Marissa was well enough, she got to work forming FTBOU. With her team of 30 Breast Cancer Ambassadors, they are staying committed to moving the needle for breast cancer research in communities of color, as well as being advocates for new breast cancer patients. FTBOU is the first organization to lead with an inclusive spirit for all women of color, all ages, ethnicities, and sizes – because it’s not just Black and Brown women being left out of the research. Asian, Pacific Islander, and Native American women are also dismally represented in the clinical trials.
Because so few Black women are represented in clinical trials around breast cancer research, the incidence of death due to breast cancer is significantly higher for Black women. According to the American Cancer Society, Black women have a 12 percent higher overall cancer death rate but are 41 percent more likely to die from breast cancer. When it comes to triple-negative breast cancer, Black women are twice as likely to be diagnosed and 30 percent more likely to die from it, even though the overall death rate for women with breast cancer in the United States dropped 43 percent between 1989 and 2020.
The medical community is aware, but what are they prepared to do about it? Rebecca Siegel, MPH, senior scientific director of ACS Cancer Surveillance and co-author of the Breast Cancer Statistics Study: 2022, said, “We have been reporting this same disparity year after year for a decade. The differences in death rates are not explained by Black women having more aggressive cancers. It is time for health systems to take a hard look at how they care differently for Black women.”
And yes, the numbers are eye-opening. But for a good (and historical) reason, there is a healthy distrust of the American medical establishment (Henrietta Lacks, Tuskegee Experiment, forced sterilization of women, Johnson & Johnson baby powder debacle, etc.). This distrust has led the medical community to believe that when it comes to cancer research and clinical trials, the Black community is not interested. This lack of trust, coupled with the belief that there is no interest in it and the lack of support and resources, is slowly and methodically killing Black and Brown women, and it doesn’t have to.
For the Breast of Us is standing in the gap for newly diagnosed Black women and women of color. Regarding resources such as cancer care boxes, fresh fruits and vegetables, and clinical trial information, FTBOU founder Marissa Thomas says those resources typically aren’t getting to the Black and Brown communities. “Their outreach isn’t necessarily to us. They’re typically going to the bigger or predominantly White organizations and feeling they’ve done their job because those organizations are much larger. So, we gather the information and disseminate it to our community members in a central location, so they don’t have to look for it”, says Marissa Thomas, FTBOU founder.
And as it turns out, this simple act of caring about what happens to Black and Brow women in the cancer community is not just changing lives; it’s saving them. Thomas and her fellow Breast Cancer Baddies, Cynthia Johnson and April Finley, have recently completed a market research study with Summer Consulting, looking at why Black and Brown women (and a select group of white women) don’t participate in clinical trials, what the biases are, and what their own experiences have been.
With this new information, Thomas and her colleagues plan to bring this information, along with action plans, directly to the medical community via conferences and journal publications, with the goal of creating an equitable environment for all women diagnosed with cancer. In this environment, all resources and all treatments are offered to all women. And yes, if it seems like Black women are once again doing the heavy lifting of saving our own lives, it is because we are.
Johnson, a fellow Breast Cancer Baddie was diagnosed with stage 2 Invasive Ductal Carcinoma in 2018** and credits For The Breast of Us with helping her make it through the harrowing ordeal. “You don’t know how much you need this until you’re in it. You have friends and family, but knowing these girls who know what you’re going through, who have walked that walk with you… it is an unbelievable connection.”
Finley was diagnosed with stage 2 Triple Negative Breast Cancer Invasive Ductal Carcinoma and the Braca-One Positive gene, which means she has a genetic mutation that caused the breast cancer. She echoes her survivor sister’s sentiments. “It’s about community… my ‘why’ is to advocate and do…not the cute, social influencer work, but the grit and the hard work so that the next woman of color does not have to go through what we went through.”
In their efforts to ensure that there is a place for women of color to support each other, in addition to having online support groups, FTBOU also hosts two podcasts – Baddie to Baddie, where the women can have those difficult but courageous conversations, and talk candidly about their experiences, and Baddie Behavior, where the women keep it very real as they discuss all the things no one talks about on the cancer journey – like how a breast cancer diagnosis has affected their sex life and relationships.
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FTBOU has joined the ranks of other organizations serving Black Breast Cancer survivors. African American Breast Cancer Alliance, Sisters Network, and Sisters by Choice are just a few of the organizations created for Black women by Black women. These organizations were created for us to talk to one another when those in place to help us forget we exist. However, as April found out, talking to someone who is not your doctor about your health issues is not something that is often (or readily) done in the Black community.
“I was almost an adult before I realized my grandmother had had breast cancer – twice! And then three of my four aunts had had breast cancer, and only one of them was vocal about it.” April’s aunt immediately told her nieces and all of the first-generation granddaughters so they could get tested. She discovered that she also had the Braca One gene mutation. When April was diagnosed, she not only told her family members but also took it a step further and shared her medical records with the women of her family and her friends—having a first-degree relative (mother, sister, or daughter) that has been diagnosed with breast cancer automatically doubles your risk of having the disease one day.
Having the hard conversations and digging into the family history to figure out who had cancer and what kind is likely to save lives and ensure a family legacy of health for generations to come. April said it best, “Black women are diagnosed at a higher rate than White women, but we’re also not participating in research. Why? Because we’re not talking.”
If you or someone you know has been diagnosed with breast cancer, please reach out to one of the support groups listed above. This is not a journey you have to go on by yourself – groups like For the Breast of Us were created with *us* in mind. And if you have never had a mammogram, you can start with an at-home self-breast exam. Until the medical community catches up, our health is in our hands.
*Cynthia Johnson has been cancer-free for four years
**April Finley has been cancer-free for six years