Adeola Adesemowo felt the change before she had a diagnosis.
It was subtle at first — easy to dismiss — but persistent enough to lead her into a small, fluorescent-lit room where answers are supposed to be delivered. She came prepared to listen.
What she did not expect was to have to insist, not only that something was wrong, but that she should be believed.
The experience left a lasting mark.
“They asked me to rate my pain. I told them it was more than 10. Someone told me, ‘Oh, you’re Black, you guys don’t feel that much pain,’ and that was a nurse,” recalls Adesemowo, who lives in Calgary.
Because of her young age and without a family history of cancer, Adesemowo had to advocate for a mammogram and additional screenings. She was diagnosed with breast cancer in 2021 at the age of 36.
Alberta Health Services (AHS) recommends screening mammograms every two years for women ages 45 to 74 with no symptoms.
But studies show Black women are more likely to be diagnosed with breast cancer at a younger age, often outside standard screening time frames.
Heather Campbell knows that all too well.
A chemical engineer living in Calgary, Campbell was diagnosed with breast cancer in 2017 at the age of 44. After six rounds of chemotherapy, breast surgery and radiation, she is now doing hormone therapy.
She says she too encountered resistance when requesting a mammogram. She wants to see more culturally informed health care and for the medical system to employ race-based data to better serve Black women.
During her cancer treatment, Campbell felt her oncology team struggled to address side effects that present differently in Black women, such as hair loss and hyperpigmentation.
When it came time for her breast reconstruction surgery, she raised concerns about scarring and healing on darker skin tones. Her plastic surgeon had no clear answers.
That conversation led to change. The surgeon altered his approach to the procedure and how he trained residents, reshaping practice in response to a gap that had long gone unaddressed.
“We have to get to a place where we actually use the full diversity of our population, and not to be scared of it, but recognize that we need to have medical practice and medical diagnosis that treat the full plurality of the population,” said Campbell.
Adesemowo and Campbell’s journeys through the health-care system reflect experiences shared by many Black women in Alberta, according to researchers working to improve cancer outcomes in the community.
But Campbell says those experiences haven’t yet translated to changes in breast cancer care.
By the numbers
Breast cancer is the most commonly diagnosed cancer among Canadian women, with about one in eight expected to develop it in their lifetime.
Much of the evidence used to shape breast cancer screening guidelines, risk-assessment tools and treatment protocols is drawn from clinical trials and cancer registries in which Black women are underrepresented or where race-based data is not consistently collected.
That gap has consequences: national Canadian research shows Black women are 45 per cent more likely than White women to be diagnosed with breast cancer before the age of 50, outside of the age range targeted by routine screening.
Data shows other disparities persist for Black women. They face up to 70 per cent higher breast cancer mortality rates. About 26 per cent of Black women are diagnosed at Stage 3 or 4, compared with 17 per cent of white women. Studies also suggest that Black women are more likely to develop aggressive subtypes, such as triple-negative breast cancer, which can affect treatment options and outcomes.
Despite the risks, screening rates remain low.
Understanding the barriers
To understand why, researchers at the University of Calgary turned directly to Black women.
Bukola Salami, the Canada Research Chair in Black and Racialized Peoples’ Health, conducted focus groups with over 100 Black women and community stakeholders across Alberta. The research, funded by the Canadian Cancer Society in partnership with the African Cancer Support Group, explored the obstacles women face when accessing breast cancer screening.
Participants described mistrust of health-care providers, discrimination and a lack of culturally relevant information about breast cancer. Unconscious assumptions about knowledge, pain tolerance, age and health literacy also shaped interactions with providers.
Historical events such as the Tuskegee syphilis experiment in the United States, combined with personal experiences with bias, have also contributed to long-standing skepticism toward the medical system.
“It involves ignoring Black women’s concerns. It also involves unconscious bias by health-care providers,” Salami said of the focus groups’ findings. “Cultural stigma and the ways health-care providers respond to Black patients’ concerns were among the biggest barriers to accessing care.”
The research also identified what works. Community-based outreach and culturally informed education significantly increased willingness to participate in screening and followup care.
Community-led support
Grassroots organizations have become critical in bridging gaps between the health-care system and Black communities.
The African Cancer Support Group, based in Calgary, connects survivors with newly diagnosed women, offering guidance rooted in a shared cultural understanding. The organization helps women navigate appointments, interpret test results and build support networks, while also addressing emotional and cultural needs.
The group also encourages Black women to participate in clinical studies with the University of Calgary, emphasizing that research cannot improve care if communities remain excluded.
“The research in the Black community is very low,” said Yinka Oladele, the organization’s executive director. “We are just bringing it out there because it can only be done by us, for us.”
Moving toward equitable care
Salami’s research highlights actionable ways to reduce disparities. Culturally tailored outreach programs, training for health-care providers on unconscious bias, policy adjustments to reduce structural barriers, and inclusion of cultural and religious supports in health care can all improve outcomes.
“The next thing is for us to roll out an intervention, engaging in conversation circles with Black women, grounded in the African traditional knowledge system to improve Black women’s health,” said Salami. “We will also use peer navigators — people that are culturally embedded within the community to drive and improve breast cancer screening awareness.”
By combining research with community input, her work aims to increase early detection, lower mortality and morbidity rates among Black women in Alberta, and provide evidence that can guide policy and practice.
From experience to advocacy
After her diagnosis, Adesemowo began working with other women in the Black community, helping them navigate life with cancer. She shares her story, provides guidance, and connects women with survivor networks that offer emotional and practical support.
“I found a community where I could share my story without shame,” she said. “Do not be afraid. Go for your checks. Not every cancer kills, and when you find it early, prognosis is much better.”
Her journey mirrors the experiences of many women in the focus groups — stories shaped by systemic challenges, personal advocacy and community support.
They say it is a reminder that addressing disparities requires listening to the people most affected and involving them in developing solutions.
