If you’ve been with us for a while or if you have Triple Negative Breast Cancer (TNBC) you know that this subtype is considered more aggressive and has fewer treatment options than other subtypes of breast cancer. By now, you’re also likely aware of the risks associated with TNBC.
In 2023, we launched a report that identifies the educational, informational, and support needs of Canadians diagnosed with TNBC. Since then, we’ve dedicated significant time to raising awareness about its findings, including targeted advocacy for improvements in key issues affecting TNBC patients or those who are at elevated risk of developing TNBC. Our advocacy focuses on three main issues: awareness and education, improving access to and understanding of genetic testing, and expanding demographic health data collection.
If you’re reading this, it’s because you recognize that these issues directly impact you, and CBCN is committed to keeping you informed about how we’re advocating for these critical matters to be addressed.
Awareness and Education
Awareness of TNBC is alarmingly low. A staggering 70.6% of triple negative breast cancer patients who responded to our TNBC survey had not heard of the term at the time of their diagnosis. Most (76.8%) were informed of the aggressive nature of the disease following diagnosis. Given that a breast cancer diagnosis is already a scary thing to face, one can only imagine the additional shock and surprise this news would bring. It paints a concerning and overwhelming picture of what their future might hold, leaving room for anxiety and grief in an already uncertain time. Improving awareness gives voice to those with TNBC and serves as an advocacy tool to drive research forward toward the development of new, effective treatments.
There has also historically been a lack of information and resources dedicated to people with TNBC. We know, from our 2023 survey, that patients with TNBC prefer to receive information tailored to their triple negative subtype (94.3% of survey respondents), but these resources have ben difficult to find (74%). Support was similarly lacking; 66.2% of TNBC patients found it was not easy or only somewhat easy to connect with other patients with triple negative breast cancer. This is why we created and launched our new TNBC hub, dedicated to providing information and ways to find support.
Genetic Testing
Understanding individual risk factors can be very challenging, especially when people don’t know where to start. Most cancers are caused by an accumulation of damage in our bodies caused by the normal aging process and environmental factors like exposure to certain chemicals and radiation, to name a few. However, for some people, changes in certain genes, known as pathogenic variants (or mutations) that are passed down through families, can increase their risk of developing breast cancer. Two of the most well-known pathogenic variants associated with breast cancer are on the BRCA1 and BRCA2 genes, which can increase a person’s risk by 45 to 85%. TNBC is associated with BRCA mutations; between 10 to 30% of individuals diagnosed with TNBC will have a BRCA mutation. This association makes testing for hereditary breast cancer an important step for individuals diagnosed with TNBC.
Access to genetic testing, however, has its challenges. Eligibility guidelines can be difficult to find and vary by province. Someone may be eligible in one province, but a person with a similar personal and family history may not be eligible in another province. Given the high association between TNBC and BRCA1 and 2 gene mutations, a triple negative diagnosis should qualify patients for testing, but this varies by age depending on province. What is also unclear is exactly how long a person waits to see a genetic counsellor to begin the process of genetic testing. Furthermore, accurate health system-level private testing can cost hundreds of dollars, while cheaper alternatives are often inaccurate and misleading. CBCN is engaging with stakeholders to ensure that genetic test eligibility is equitable across Canada and that public-facing information on genetic testing eligibility is available in all jurisdictions.
Finally, understanding personal risk factors is complicated. To address this, we recently created a factsheet to help individuals learn more about this type of breast cancer and the steps to take to determine if they qualify for hereditary cancer testing. Hereditary risk is one of several risk factors for developing breast cancer. That’s why everyone should speak with their healthcare provider to understand their individual risk, especially if you’ve been diagnosed with triple negative breast cancer.
Demographic Health Data Collection
In addition to equipping patients with the right information, we need to ensure our healthcare system is collecting the right data. We know that TNBC is more likely to impact young women, as well as Black and Hispanic women but this data is based on US statistics. Even the statistics we have on the association between BRCA mutations and TNBC, mentioned earlier, is primarily based on international data. Too much of the data we currently use is not based on Canadian information and, therefore, may not accurately reflect the Canadian population. If we 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.
Our work is far from over, but we are committed to making meaningful strides for those affected by triple negative breast cancer. By continuing to raise awareness, pushing for accessible and equitable genetic testing, and advocating for comprehensive demographic health data collection, we aim to create a future where every person diagnosed with TNBC has the support, resources and care they need.
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