In an era where modern medicine has revolutionized therapies for cancers, breast cancer still affects over 30,000 Canadian women in 2024. And while the risk of dying from breast cancer has reduced since the 1980s, the Canadian Cancer Society still expects over 5000 people (mostly women) to die of the disease this year. Fortunately, breast cancer is very survivable if caught early. 5 year survival rates for women with Stage 1 breast cancer is 100%. It then falls to 92% for Stage 2, 74% for Stage 3 and 23% for Stage 4. 

While survival rates are good, the incidence of breast cancer cases is increasing. According to the University of Ottawa, there was a 46% rise in the number of breast cancer cases among Canadian women in their twenties over the past 35 years. Taking action early is especially helpful as young women grow into midlife adulthood. Fatalities due to breast cancer are actually highest for those in their forties, even more than older adults in their fifties and sixties. This is due to the increased likelihood of contracting an aggressive type of breast cancer.

Looking closer at population data, Black women are somewhat less likely to be diagnosed with breast cancer but also more likely to die from the disease. The reasons for higher mortality among Black women is a contentious issue that recent literature has helped us understand. 

Breast Cancer in the Community

A major debate in the community is the biological roots of breast cancer in the Black community. Recently, Dr. Jean Seely (head of breast cancer imaging at the Ottawa Hospital) appeared on CBC radio (May 30th on As It Happens) talking about breast cancer screening age. Her research controversially shows that Black women are biologically predisposed to more aggressive cancers, as opposed to a solely social reason like racism.  She went on to say:

“Black, Indigenous, Asian, and Hispanic women are more likely to get their diagnosis of breast cancer in their 40s. It's a different biology. We see this. And we have evidence in Canada that they're more likely to be diagnosed in their 40s -- twice as likely -- and they are much more likely to be diagnosed at an advanced stage -- twice more likely. And the reason for that is because the guideline has discriminated against women in their 40s; the women who are paying a very heavy penalty are the women who are not white, who are more likely to get breast cancer in their 40s. So these guidelines are -- unfortunately -- going to perpetuate that.”

The most aggressive and deadly forms of breast cancer affect women in their 40s, which Seely says is the age racialized women are more likely to get breast cancer. So why do Black women present a more deadly form of breast cancer?

Dr. Fahima Osman, a breast cancer surgeon at North York General Hospital, validated the biological claims with certain caveats. 

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“Black women do have more aggressive types of breast cancer, such as triple-negative breast cancer. There are also social determinants of health that also influence the mortality rate, such as in the United States, like access to private health insurance. These are important factors that also contribute to late diagnosis and earlier protections.”

A paper in the International Interdisciplinary Journal of the American Cancer Society found that rates of triple-negative breast cancer - one of the most aggressive forms of breast cancer - were significantly more prevalent in Black women of West African descent. Rates for Black women of East African heritage were much lower by comparison.

The disproportionate prevalence of triple-negative cancer in Black women of West African descent over other Black communities leads researchers to believe that the increased mortality from breast cancer is mainly biologically rooted. However, Dr. Osman also believes the discrepancies are due to lower medical education and preparation in the community.

“There isn't enough screening for the disease within the community,” she said. “Black women tend to present later when they actually have symptoms of breast cancer, like they feel a lump or breast pain, and that's usually at a later stage.”

A lack of information not only hurts Black women but can make anyone’s cancer journey harder. To help patients struggling with the disease Dr. Osman developed MyJourney, an app that connects patients with their doctors, specialists and information on their medical journey. This digital community of care helps patients and practitioners by making information, education and communication easier.

“One of the main reasons we developed this app was to help support our patients during their cancer treatment,” Dr. Osman explained.

Already helping patients at North York General Hospital, MyJourney is establishing itself as a community-provided tool that can help reduce the education gap in communities of colour. 

From Pre to Post Treatment

The first Canadian-trained doctor from Toronto's Somali community, Dr. Osman's idea came after a career of providing care at North York General Hospital in Toronto and back home in Somaliland. Working in a region that lacks the resources to cure patients of preventable diseases is part of the app’s origin story. It’s how Dr. Osman learned to focus on providing accessibility for all, irrespective of income.

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MyJourney has been helping North York General Hospital (NYGH) patients since it went live on September 19, 2022. The digital platform centralizes all patient information in a digital location for them to access. The information includes appointments and personalized information about their disease and treatments. Integrated with hospital information systems, patients get customized education resources to understand what is going on with their bodies. 

“Patients in North York General get access to the app after consulting with the nurse in the Breast Cancer Centre upon diagnosis,” said Osman. “They are then onboarded onto the app. “

Dr. Osman's innovation provides all patients with a community of care irrespective of who they know or how much they can pay. A community of care includes all the actors involved in a patient's journey through their diagnosis and treatment. By connecting a patient’s oncologist for example, with family doctors, and even other resources, patients are given access to their medical information. Instead of calling in to figure out appointments, it's right there on the app. Forgot the name or contact of a specialist? It's right there. The application lets nurses get back to what they want: spend time with patients. On an institutional level, the app also helps North York General with healthcare compliance. The hospital can track data and make changes when adhering to industry and government standards through a digital system. 

Because of initiatives like the app, the NYGH’s Breast Cancer Program is Canada’s first and only to be accredited by the American College of Surgeons. The only Canadian institution to receive accreditation, the NYGH’s Breast Cancer Program had to demonstrate compliance with standards set by the NAPBC, including proficiency in leadership, clinical services, research, community outreach, professional education, and patient quality improvement.

“The most challenging standard that we had to follow was providing our patients with their survivorship care plan, which basically gives them a summary of their treatment and education on what to do after their cancer treatment,” said Osman. According to her, other hospitals hired more nurses to manually enter patients' cancer summaries and other information that the app does automatically. Unable to keep up with the data needs, most healthcare centres could not attain the prized accreditation. 

“We created the mobile app to provide patients with their summaries. So not only does it give them customized education content, it also gives them access to their cancer summary,” explained Osman. 

Moving into the future, Osman says she wants the app to connect with other hospitals, as it has recently with Sunybrook’s radiation department, and to expand the communities of care by including community health partners and the public. 

“I would love to have it accessible to others who do not have cancer. But in a way that they could learn more about prevention and encourage them to go for screening, to give them information on how to prevent themselves from getting breast cancer.”