August 7, 2024: We Need to Talk About Breast Cancer

It’s no secret that the Canadian healthcare system is undergoing a transformation. As we navigate these changes, there are a lot of mixed messages about what the result will be. On the one hand, we see significant investments into health infrastructure, recruiting and primary care. Then in the same news cycle, we see headlines about challenges in hospitals, workforce retention, and patient waitlists. These discussions are not new, but they are intensifying. As someone with the lived experience of breast cancer, I want to remind Canadians and policy makers that patients must be prioritized within these changes.

I admit, there are many priorities to balance. This can make knowing what to focus on a challenge. Regardless of what is happening in the healthcare system, breast cancer education is critical. Education should be available for individuals both with and without a breast cancer diagnosis. To begin, it’s important to recognize that there are different sub-types of breast cancer. In the fall of 2023, the Canadian Breast Cancer Network (CBCN) published our TNBC Report. This report revealed the relationship between a patient’s psychosocial needs and breast cancer subtype, with a focus on the needs of those diagnosed with the triple negative breast cancer (TNBC) sub-type. One of the reports’ significant findings was that many Canadians are not aware there are different subtypes of breast cancer. For example, 70% of people with TNBC had not heard the term before their diagnosis.

One reason TNBC may not be well known is because it is a rarer form of breast cancer. Estimates show that around 10 to 20% of all breast cancer diagnoses are of the TNBC sub-type. Although it is rarer, many people are still diagnosed with TNBC. To put TNBC into the Canadian context, an estimated 28,600 Canadian women received a breast cancer diagnosis in 2022. If we assume that 10 to 20% received a TNBC diagnosis, it would mean that between 2,860 to 5,720 women in Canada received a TNBC diagnosis in 2022. That’s an average of up to 15 women per day! TNBC is also a more aggressive sub-type of breast cancer that has fewer treatment options and a high rate of coming back after treatment.  In addition to this, TNBC is more likely to impact younger women, as well as Black and Hispanic women.

Canadians are aware of the risk of breast cancer. They are less aware of the different sub-types of this disease. We need to do more so people can learn about their personal risk factors of developing breast cancer and its various sub-types. Unfortunately, understanding individual risk factors can be very challenging, especially when people don’t know where to start. Some people will have a low risk of developing breast cancer while others will be at higher risk, depending on a variety of factors.

For example, one factor that can increase a person’s individual risk is if they have an inherited gene that carries the risk. This is known as hereditary breast cancer and we know that between 5 to 10% of breast cancer cases are hereditary. Two of the most well known genes that increase a person's risk of developing breast cancer are mutations of the BRCA1 and/or BRCA2 genes. Mutations of the BRCA1 or BRCA2 genes increase the risk of developing breast cancer by 45 to 85%. For those of Ashkenazi Jewish heritage, 1 in 40 will have a BRCA1 or BRCA 2 mutation. This is compared with 1 in 400 people in the general population.

TNBC is associated with both hereditary breast cancer and mutations to the BRCA1 and BRCA2 genes. Between 10 to 30% of women diagnosed with TNBC will have a BRCA1 or BRCA2 mutation. In our TNBC Report, BRCA1 and BRCA2 mutations were reported in only 3 to 5 % of non-TNBC sub-type population, compared to being reported in 11 to 26% of those with the TNBC sub-type. This takes us back to my earlier point that some individuals will be at a higher risk of developing breast cancer than others.

People may not know how to understand their risk of developing hereditary breast cancers, such as those associated with a BRCA1 or BRCA2 mutation. To address this, CBCN recently created a factsheet people can use to calculate their individual risk. The factsheet also provides information on the role of genetic testing in calculating this risk. Hereditary risk is just one of several risk factors for developing breast cancer. That’s why everyone should speak with their healthcare provider to understand their individual risk factors. When healthcare providers share resources about what increases the risk of developing breast cancer, people can be more proactive about their health. For those who may not have a primary care provider, provinces and non-profit groups can help fill these gaps.

In addition to equipping patients with the right information, we must ensure our healthcare system is collecting the right data. There is room to improve Canada’s demographic health information, particularly around race, ethnicity, and Indigenous identity. Advocates have been calling on healthcare providers to collect this data for years, hoping to address inequalities. We saw the value of such data during the COVID-19 pandemic. Public health officials were able to see gaps in protection and promptly took action. Too much of the data we currently use is US-based and may not reflect the Canadian population. If provinces start collecting health data on race, ethnicity, and Indigenous identity, it will greatly improve our understanding of breast cancer in Canada. This call for the collection of race and ethnicity data is in line with the Canadian Cancer Society’s and the Canadian Partnership Against Cancer’s Pan-Canadian Cancer Data Strategy.

Canada is going through many healthcare challenges and changes. I want to remind Canadians of how important it is to prioritize patient, and those most at risk of becoming patients; their needs must be part of the ongoing conversation. In the breast cancer space, education and awareness remains a key element in supporting those who are diagnosed and preventing new diagnoses.

Cathy Ammendolea is the Board Chair with the Canadian Breast Cancer Network, Canada’s leading patient-directed breast cancer health charity. Cathy also has the personal lived experience of having had a breast cancer diagnosis.

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