Sacramento breast cancer survivor supports Black women on their journey of healing
Just two months shy of her 43rd birthday, Lillian Winrow was leading a staff meeting when she learned of her breast cancer diagnosis.
“You hear ‘cancer’ and you go deaf,” she said.
Winrow was diagnosed with Stage 1 triple-negative breast cancer, a cancer prevalent among Black women.
She received her first chemotherapy treatment the day before her birthday.
“The first thing I thought was, ‘What about my kids? What about my husband? My mom, who was diagnosed two years prior to me?’”
Black women with breast cancer in the U.S. are 41% more likely to die than white women, even though fewer Black women are diagnosed with the disease, researchers say.
The risk is particularly great for African-American women younger than 50.
In her early days of treatment, Winrow’s hairdresser introduced her to Rev. Tammie Denyse, and her Sacramento-based Carrie’s TOUCH, a national nonprofit support network for Black women diagnosed with breast cancer.
“We wanted to create a space that spoke life to Black women who were facing death and mortality,” Denyse said.
Named for Denyse’s mother and co-founded with her late sister, Lynne Rankin-Cochran, the organization began in 2006. The letters that spell out its name spell out its mission: Teach, Outreach, Understanding, Caring, Healing.
“We have to figure out how to navigate life,” Denyse said. “We let women and men know that you are more than your diagnosis and that we need to act quickly.”
That mission takes on special significance every October during national Breast Cancer Awareness Month. Carrie’s TOUCH conducts virtual and in-person events throughout the month to reach the community and build awareness around education, early detection and preventative care.
Sacramento-area cancer survivors band together
The rates of Black women diagnosed with the disease in the Sacramento area, though lower than the 41% marker, are among the highest in California, regardless of age, according to the National Cancer Institute’s State Cancer Profile. Placer County ranks second in the state. Sacramento County ranks eighth.
The death rate is more grim. Sacramento County, at nearly 34 deaths per 100,000 ranks second only to Stanislaus County and surpasses the state rate of 29 deaths per 100,000.
The reasons why are more complex, says the national Breast Cancer Research Foundation. Socioeconomic factors, structural racism, higher rates of diabetes, heart disease and obesity; inadequate health insurance or access to care including cancer screenings, follow up visits and completion of therapy — all contribute.
Educating Black women on preventative care, early detection of breast cancer and what to do if they are handed a diagnosis is key. Empowering women to take greater control of their care and equipping them with the information they need are crucial to changing that calculus, Denyse and other advocates say.
Denyse was diagnosed 18 years ago with Stage-2 breast cancer. She was 39 then, a Black woman and mother of three with limited resources, information gleaned mostly from the internet, and receiving care from a doctor who told her she wouldn’t survive the disease.
But she did. And in her survival journey, Denyse has made it her life’s work to close the mortality chasm and ensure Black women receive the information, support, treatment and care they need to keep their cancer diagnosis from becoming a death sentence.
The BE4UGO (“before you go”) app was developed for Carrie’s TOUCH. It acts as a digital checklist for patients to use when they consult their medical team.
“It really asks you questions about how you’re feeling; changes in life. We’re used to enduring excruciating pain, so, (the app) keeps what’s important in front of us,” Denyse said.
The app also contains connections to support groups, financial resources, low cost therapies and oncologists of color.
“It’s important to become educated,” said Rhonda Smith, director of nonprofit health equity advocates, California Black Health Network, and 15-year breast cancer survivor. “Asking important questions about what cancer I have, what stage am I, what type of treatment is appropriate for the cancer I have?”
Smith says breast cancer screening rates among Black women have improved, but there is still aversion to getting annual mammograms. Pain, fears about radiation and other misconceptions about screenings are among the stumbling blocks.
Women can access free breast and cervical cancer screenings through the state’s Every Woman Counts program, through the California Department of Health Care Services. The website contains educational materials, breast and cervical cancer information and links to early detection programs.
The science is evolving, Smith said. The WISDOM personalized breast screening study, pioneered at UC San Francisco, recently expanded to women as young as 30 and replaces annual mammograms. Its approach considers a number of personal risk factors from age, health history and lifestyle to genetics and breast density.
Navigating a maze of emotions to help others
Denyse drew from her own experience and frustration navigating the emotional maze of diagnosis to establish her organization.
Denyse focused on her mental well-being and sought out therapy to help her cope, and in that thought of other Black women who were neglecting their self-care in the face of the disease.
“We’ve been socialized to believe our pain isn’t significant and doesn’t matter,” Denyse said.
Denyse’s research confronts the archetype of the Strong Black Woman. The same armor forged in slavery and a shield that has sustained generations of Black women as survival mechanism was also a roadblock to receiving effective and compassionate cancer care, Denyse surmised.
Dr. Annette Stanton, a distinguished professor and senior researcher at UCLA, helped Denyse prepare and conduct her research and publish her findings. The two met through the California Breast Cancer Research Program’s Quick Start, which pairs researchers with community organizers.
“Tammie called me (in 2018) and we had a virtual face-to-face meeting. It was essential from the beginning that that research gives back to the community,” Stanton said. “She wanted to give that back to women from beginning to end.”
And Denyse needed a commitment from Stanton, who is white: “White researchers often come into the community, gather their research and leave,” Stanton said. “She wasn’t going to have that.”
Those early talks became a series of four-hour sessions in Sacramento, Oakland and Los Angeles. Black women talking with Black women across generations about the shared experiences of battling and living with cancer.
Denyse and Stanton found that oncologists expected Black women to bear the trauma of a cancer diagnosis and the pain of treatment in the same unflinching way they were expected to carry so many other burdens, the women told them.
Family and friends saw them as strong enough to carry even this load while continuing to shoulder the responsibilities of family and home.
The women themselves struggled with reflexively suppressing or minimizing their symptoms during doctors’ visits. They felt they weren’t heard or understood by their physician when they tried to tell them what they needed. This robbed them and their doctors of the information they needed to hone in on a diagnosis or aid in their treatment.
The broad ranging discussions, Project SOAR, or, Speaking Our African-American Realities, become the basis for testimony and research to improve Black women’s cancer outcomes.
By the end, “there was this incredible sense of relief. Women who understood what they were going through. They were validated in a way that hadn’t happened before,” Stanton said.
Women like Winrow, who was diagnosed with breast cancer in 2009 and is now a 14-year survivor. Carrie’s TOUCH offered an “intimate setting that made it homey, cozy, and there were people who looked exactly like me.”
“They had home-cooked meals. Women were literally coming in and taking off their wigs. At that space, you didn’t have to explain why you were crying, or why you took your wig off,” she said. “It was a place of comfort. It felt like home.”
The sense of home Winrow felt, Denyse extends to the community.
“We kept seeing everything about death. We wanted to show that Black women survive. We want to give them their flowers while they can smell them,” Denyse said. “Yes, (the mortality rate is) 41%, but 59% are living. Let’s celebrate the 59%.”
