When Yinka Oladele's husband was diagnosed with multiple myeloma in 2016, she automatically became his caregiver — but she struggled to find the information and resources needed to navigate his diagnosis as a Black patient.
She then made a vow: as soon as her husband was better, she would fill that gap by providing others with the resources, information and support they needed.
That led to the creation of the African Cancer Support Group, which is focused on helping patients, survivors and caregivers of African descent navigate the challenges associated with a cancer diagnosis.
"It is not your fault. It is nobody's fault that you have cancer," said Oladele.
It's a message that she shares often with group members.
The group, whose founders were trained by the Canadian Cancer Society, is a safe environment for people to share their experiences, connect with others who have gone through a similar journey and receive encouragement to continue fighting.
Oladele's husband, Bayo, would have welcomed such a group when he was going through treatment.
"It doesn't matter what stage the cancer is when you're diagnosed, the first thing that goes through your mind is, is this going to be the end of life?"
Six years later, he calls himself a cancer survivor. He says having a group like this, and a place to connect with Black cancer survivors, would have allowed him to see the possibility of survival amid his diagnosis.
"You don't see anybody of African origin that actually survived cancer that you can talk to," said Bayo.
The Calgary-based group now supports more than 40 families in Alberta and beyond. Aside from information and resources, the group provides meals, house cleaning, complementary therapy and more. They partner with various organizations, health coaches, counsellors, massage therapists and acupuncturists.
Outside of the group's membership, the Oladeles are also working to destigmatize cancer for Africans, Caribbeans and Black Canadians, so people get tested more regularly.
Destigmatizing cancer for Black Canadians
Florence Omara felt the effects of the stigma surrounding cancer when she was diagnosed with Stage 2 breast cancer in 2017. She says that in African culture, there's a misconception that cancer only affects people born in North America.
It's in part because, growing up in Africa, nobody talked about cancer. Omara had only started hearing about it when she moved to Canada.
"Because our community does not talk about cancer, we had lost so many people to cancer and we didn't know they died of cancer, either, because nobody talked about it," said Omara.
When she received her breast cancer diagnosis, she hid it from her kids for about a month. They were also mourning the recent loss of their brother and she didn't know how to bring up the topic.
"I didn't want to talk about it, but I became so depressed."
Even when word of Omara's diagnosis spread, many people avoided the words breast cancer, instead saying things like, "Florence is sick."
"But now, we're making people talk about it," said Omara, who works alongside the Oladeles to run the support group.
Late diagnoses among Black patients, says oncologist
Because of the stigma, Oladele says most people of African descent don't go for regular cancer screening. So if someone does have cancer, it often isn't detected until it's in its late stages — or "until people are almost dead."
Dr. Doreen Ezeife, a medical oncologist at Calgary's Tom Baker Cancer Centre, agrees.
"There has been a lot of research showing that Black patients are more hesitant to adopt screening programs, and they generally experience additional barriers to cancer screening programs," said Ezeife.
She says those barriers and culturally related hesitations lead to later diagnoses of cancer in Black patients.
This is why she refers her African clients to the support group — especially during the pandemic, as community is needed more than ever.
"Groups like the African Cancer Support Group can really empower Black patients, not only by providing community support, which is so important, but also by improving health and cultural literacy around their cancer tests and treatments," she said.
She says many Black patients have a strong sense of cultural identity and community, so providing that culturally sensitive care and connection can improve their uptake of cancer tests and treatments.
Still, Ezeife says oncologists have limited understanding about how cancer impacts Black patients in Canada, because Canadian registries don't collect race and ethnicity data — which she says is part of the problem.
Lack of race-based data
Without race-based data, Canadian researchers are unable to study the impact of race and ethnicity on cancer incidence and mortality, says Ezeife.
This type of data is collected in other countries, such as the United States and the United Kingdom.
In fact, according to the American Cancer Society, Black women in the U.S. have the highest breast cancer death rate, despite a lower incidence of the disease compared with white women.
"Similar to the U.S., we know that there are higher rates of prostate cancer and prostate cancer mortality in Black male patients," Ezeife said.
Dr. Stuart Edmonds, an executive vice-president with the Canadian Cancer Society, said in a statement that collecting race-based data in Canada would help cancer experts understand, address and document disparities in health care among racialized groups.
"At this time, the data needed to rigorously estimate population subgroup rates and meaningfully compare the differences within the population are limited or lacking," said Edmonds.
He says members of Canada's cancer control community are investing in efforts to increase data collection and address those gaps.
"For example, the Canadian Cancer Society is currently co-leading a pan-Canadian cancer data strategy with the Canadian Partnership Against Cancer (CPAC) that focuses on enhancing data collection, integration and use to improve cancer control and outcomes for all people in Canada."
Ezeife, Oladele and others in the community are pushing for this data in Canada.
"A goal of ours is to work with some of the leadership, and this can help to initiate collection of this data. And that's kind of a boulevard in the next few months to years," said Ezeife.
For more stories about the experiences of Black Canadians — from anti-Black racism to success stories within the Black community — check out Being Black in Canada, a CBC project Black Canadians can be proud of. You can read more stories here.