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For Michelle Audoin, breast cancer is a disease that she is all too familiar with.
While she was diagnosed with metastatic breast cancer and thyroid cancer at the age of 40, Michelle's journey with the disease began at the young age of 14, when she underwent surgery to remove her first benign breast tumour.
Following the surgery, Michelle built a long record of biopsies, tests, and exams. Throughout those experiences, Michelle felt that she didn't have a place to speak up. Her concerns about breast lumps and breast cancer risks were repeatedly dismissed.
"One specialist even told me that I just had lumpy breasts and there was nothing to be concerned about," says Michelle. "When you proactively ask questions and you feel like those questions aren't being answered, you start to feel like you're not a partner in your own healthcare."
With no guidance or outlet to process her experiences and emotions, Michelle felt anxious and alone.
In 2017, Michelle was diagnosed with ER+ breast cancer in her left breast. While weighing her options for breast reconstruction, she came across a big barrier – the inability to find images of reconstruction and scars on Black women.
"Some healthcare providers would offer to find images but couldn't find any. When I brought it up again, they would say 'don't worry these always look good on women of colour'," says Michelle. "When you're trying to make a big decision about your body and you don't see anything that looks like you, you start to question why there's nothing out there."
The inability to find representative images, and misinformation about what radiation burns look like on melanated skin were only a few of the barriers that she faced. Turning to journaling to alleviate stress, Michelle made a wish-list of changes that need to be made for cancer care to become more inclusive to the BIPOC community.
"The medical community needs to do a better job in letting Black women know more about cancer risks and outcomes," says Michelle. "We need more race-based research and data, diverse support groups and resources, ethnically and culturally diverse patient navigators, patient-friendly integrated referral systems, and equal representation in images and stories."
Following the death of George Floyd in 2020, Dr. Andrea Covelli knew there was more she could do to support BIPOC in her community. A surgeon-investigator specializing in breast oncology at the Princess Margaret Cancer Centre and Mount Sinai Hospital, Dr. Covelli aims to better understand the impact of race on a patient's experience of breast cancer.
Research led in the United States shows differences in the treatments and outcomes for Black women undergoing breast cancer care. Black women present more frequently with advanced and metastatic disease, are less likely to receive treatment, and more likely to experience delays in care and receive non-standard care.
Overall, Black women have worse breast cancer outcomes, even when accounting for socioeconomic status.
Recognizing the need for more local race-based health data to inform programs and policymaking, Dr. Covelli launched the Lived Experiences of Black Women with Breast Cancer project to better understand the experiences of Black women with breast cancer, particularly in the context of how race and sociocultural factors shape their journey in the primary care and cancer care systems.
The team is hosting qualitative interviews with Black women of all ages from across Canada who are undergoing treatment or completed treatment within the past five years. The aim is to hear about their experiences and the barriers, challenges, or inequities that they've faced during the stages of prevention, diagnosis, treatment, and post-cancer care.
Founded by Leila Springer, The Olive Branch of Hope – a breast cancer support service intended to assist Black women affected by cancer – is one of the community partners that connects Black women in the community with the project.
Michelle committed to being an advocate in her community
So far, themes that commonly arise in the project's interviews include the feeling of not being heard, the challenge of self-advocacy particularly among young Black women, the absence of representative images and stories, the lack of representation in the response to treatment-related side effects such as hair loss and medical wigs for women of colour, and the stigma around cancer, worsened by the lack of conversation about the disease in the Black community.
Once the interviews are complete, Dr. Covelli will host focus groups with physician champions, patient representatives and representatives from support networks, organizations, and cancer societies to identify the priority themes and the barriers, challenges, and inequities to address. For the project's final stage, the team will collaborate with stakeholders to implement pan-Canadian strategies that make high-quality cancer care equitable.
Determined to improve the experience for Black cancer patients, Michelle is committed to being an advocate in her community. In 2020, she took her journaling notes and turned them into an advocacy project aimed at filling the gaps in cancer care by shining a light on the unique needs of BIPOC women, who are currently underrepresented. For this, she partnered with the national not-for-profit charity, Rethink Breast Cancer, to launch Uncovered: A Breast Recognition Project, a resource featuring eight women of colour sharing their breast cancer stories and images of their post-surgical scars.
Michelle also became involved with the research study at the Princess Margaret. She describes openly sharing her journey with breast cancer during the interview as an emotional experience.
Michelle's message to other Black women going through breast cancer is to look for support networks, and to tell their story.
Researchers involved in the project include Dr. Aisha Lofters, family physician and Chair in Implementation Science at the Peter Gilgan Centre for Women's Cancers at Women's College Hospital and associate professor at the University of Toronto, as a co-investigator; Dr. Juliet Daniel, senior scientist at McMaster University, as a collaborator on the study; and Dr. Jaime Escallon, clinician-investigator and member of the Gattuso Rapid Diagnostic Centre and M Lau. Breast Centre at the Princess Margaret Cancer Centre. Dr. Gayathri Naganathan, general surgery resident, and Ielaf Khalil, master's candidate, have contributed immensely to the study through conducting participant interviews.