Staff at the TAIBU Community Health Centre knew something needed to be done.
Located in Scarborough, on the eastern edge of Toronto, the health clinic serves a predominantly Black and immigrant population. But looking at their patients’ charts, staff found the vast majority weren’t up to date with screening and the clinic was far below Ontario’s provincial screening averages.
It was a concerning trend, as research shows that delays in cancer screenings often lead to later diagnosis and a higher risk of death.
“If the community is experiencing any challenges, the answers are within the community,” said Dr. Onye Nnorom, who was a family doctor at the clinic at the time.
So back in 2013, the centre started reaching out to the community to find out why.
“One of the concerns that a number of patients mentioned was that they didn’t see any data that told them how their own community was doing with regards to cancer deaths or cancer outcomes,” said Nnorom.
Other barriers were reported, too, including stigma and fear around cancer, language and cultural barriers, and a lack of education about cancer screening.
After listening to its patients, TAIBU created a task force to address patient concerns and improve its cancer screening rates for breast, colorectal and cervical cancer.
Over a seven-year period, the clinic had surpassed provincial averages for those cancer screenings, said Nnorom, now an assistant professor at the University of Toronto’s Temerty Faculty of Medicine.
The rates for breast and colorectal cancer screenings offered tripled from 2011 to 2018, while cervical cancer screening rates also improved. (In Ontario, cancer screening rates are reported as services offered instead of completed.)
TAIBU then conducted a further audit, reviewing more than 700 patient charts for the year 2017-2018 to see if patients who were offered screening actually followed through with the tests. It found 88 per cent of mammograms, 83 per cent of fecal occult blood tests (FOBT) and 99 per cent of Pap tests were completed.
The results of the program were published this month in a study in the medical journal Canadian Family Physician.
Between 2011-2018, the rates of breast, colorectal and cervical cancer screening offered by TAIBU increased from 17 to 72 per cent, 18 to 87 per cent and 59 to 70 per cent respectively.
The centre credits its success to using an Afrocentric approach built on listening and putting the community first.
Staff developed a range of culturally sensitive materials — such as educational pamphlets featuring their own diverse clinicians and staff, provided information in different languages, had community ambassadors lead outreach efforts and launched an extensive phone-based followup program, where staff took the time to explain and answer questions about screening.
Nnorom said they hope the study provides other health-care providers with ideas on how to approach the issue of cancer screening in non-white and immigrant communities, who tend to be underscreened for cancer.
“Unfortunately, in Canada, we don’t have very good data that tells us more about people’s race or ethnicity or culture or different factors that impact their care and their outcomes,” she said.
‘Screening guidelines might have to be different’
In Canada, data on race or ethnicity and cancer isn’t collected, though Nnorom and other doctors say it’s needed to address gaps in our health-care system.
Such information could improve cancer prevention and treatment for Black and ethnic groups in Canada, said Dr. Mojola Omole, a surgical oncologist with Scarborough Health Network.
One stark example is highlighted by U.S. data that shows significant disparities between Black and white women when it comes to breast cancer — particularly when it comes to mortality.
According to the American Cancer Society, Black women in the U.S. have the highest breast cancer death rate, despite a lower incidence rate of the disease compared to white women.
Research in the U.S. and U.K. also shows that Black women tend to have a more aggressive form of breast cancer (triple negative breast cancer) and are often diagnosed at a younger age in comparison to white women.
Canadian screening guidelines for breast cancer vary from province to province, but often start at age 50, unless the patient is at risk, has a family history of the disease or a known gene mutation.
Gathering that data here could help inform — or even change — our current screening guidelines in Canada, said Omole.
“I do think our screening guidelines might have to be different, because we know some data that Black women present at an earlier stage,” she said. “So we might have to have a different approach.”
Black women face other challenges too when it comes to cancer care, she said, like a lack of images to show the difference in scarring after reconstruction surgery on darker skin tones or even access to wigs that match different hair textures, for patients who have hair loss after chemotherapy.
“All of those things currently aren’t being taken into consideration,” said Omole.
There are efforts being made to enhance awareness around the impact of cancer on people of colour in Canada. In October, Toronto’s Women’s College Hospital, in collaboration with the organization The Olive Branch of Hope, launched a website, created by Black women with breast cancer to help guide others on their journeys.
Michelle Audoin is the founder of another effort called Uncovered: A Breast Recognition Project, an online resource and photo series that shares the experiences of Black, Indigenous and women of colour with breast cancer.
Audoin started the project after her own diagnosis, when she found there was a lack of information about cancer’s impact on women of colour.
“It could be from a lack of images of scars, like my situation was, to misinformation about what radiation burn looks like on melanated skin,” she said.
The women who have shared their stories for the project ran into similar issues, she said.
“They want to see images like them, of black and brown bodies and their reconstruction scars. They want to have more race-based data. They want to have support groups that reflect their cultural diversity as well,” said Audoin.
Francine Holness chose to share her story for the project, hoping to bring more awareness to some of the unique experiences women of colour encounter.
Holness discovered a lump in her breast in October 2020, but due to the pandemic, her diagnosis was delayed until January. She was then diagnosed with stage 4 metastatic breast cancer earlier this year.
At 43 and with no known history of breast cancer in her family, she had not started regular mammograms.
Holness had a lumpectomy earlier this year and did several rounds of radiation, but the cancer had spread and chemotherapy isn’t an option. Her doctors have her on palliative medication.
“I’m processing my mortality,” the mother of four said. “I may have 10 years. We don’t know. They’ve given me two to seven.”
She is already talking to her two daughters about their risk of breast cancer and the importance of undergoing genetic testing and screening, she said, so she can prepare them for “what’s ahead for them.”
She says she’s also focused on helping them navigate the health-care system as Black women and hopes her story may help others, too.
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.
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