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Michelle Audoin will never forget how scary it was to have a benign mass removed from her breast at the tender age of 14. More than anything, she remembers the shame she felt when she looked in the mirror and saw the scarring it left behind.
When she was diagnosed with advanced breast cancer 26 years later, requiring a bilateral mastectomy, she found herself struggling with the same challenges. As a Black woman, she didn't know how breast reconstruction would look on her, lacked guidance about how to manage scarring on Black skin, and was disappointed by the scarcity of resources for Black people with breast cancer.
She decided to do something about it.
"I had to reconcile the 14-year-old girl inside me who still had this shame about my scarring and the need to see myself represented to make an informed decision about my treatment options," says Michelle, 47.
Now a patient partner at Princess Margaret Cancer Centre, Michelle is proud to say she's putting her lived experience to work by participating in research that focuses on Black women.
Building an important global evidence base
On World Cancer Day, Sunday, Feb. 4, the Princess Margaret is highlighting its commitment to accelerate breast cancer research in Black communities – a critical step towards improving care for patients such as Michelle not only locally, but globally.
"Breast cancer research has been done in predominately white populations and Black women have been historically underrepresented," says Dr. Danielle Rodin, Head of the Global Cancer Program at Princess Margaret Cancer Centre.
The lack of research being done is compounded by structural inequities in access to care across the globe. This has led to huge discrepancies in cancer survival rates between Black communities and their Caucasian counterparts everywhere.
"What we're trying to do at Princess Margaret Cancer Centre is build an important global evidence base around how we can improve the experiences, care and treatment outcomes for Black women with breast cancer both here in Canada, and around the world," Dr. Rodin says.
The research Princess Margaret Cancer Centre is doing aims to address these inequities through the following studies:
Michelle is an integral part of the ongoing efforts at the Princess Margaret to address racial disparities in cancer care, offering her experiences to studies like these and others when called upon.
She hopes her contributions will encourage others in the community to get involved in research, while ensuring other Black women don't have to go through the same experiences she did.
Among the challenges Michelle says she faced, was not being provided with education about her risk factors or what to look out for after her first incident with a breast mass at 14.
"I grew up in this grey area of being scared, knowing that there was something wrong with me that could become potentially very dangerous and challenging in the future, then not having the space to see myself represented," she explains.
She has also experienced side effects from her cancer drugs that weren't listed on the bottle. This, she says, is because Black communities were left out of the clinical trials that initially tested the treatment.
While the side effects are not life-threatening, she says they are bothersome and distressing, and something many other Black women experience, as evidence suggests.
"I remember thinking if my sister, cousin, niece, or even my child was to be diagnosed one day – would things be any different for them?" Michelle says.
"The answer was no. And that frustrated me."
More awareness will lead to more research
That's when, after years of journaling about her frustrations, Michelle decided to build something bigger than herself. In 2020, she ignited her advocacy and helped create the digital and print resource
Uncovered: A Breast Recognition Project, in collaboration with Rethink Breast Cancer.
Uncovered initially started as a platform for Black women to share images and stories of their breast reconstruction journey. It inspired many other communities to come forward with similar experiences, including Indigenous, Asian and South Asian women.
Uncovered features photos and stories of breast cancer as experienced by Black, Indigenous and women of colour. It has been shared as an educational tool and as a patient support resource locally, nationally, and internationally.
Michelle's advocacy work has led her to more collaborative opportunities with many Canadian organizations and research institutions, including the Canadian Institutes of Health Research – Institute of Cancer Research (CIHR-ICR), the Ontario Institute for Cancer Research's Patient and Family Advisory Council (OICR's PFAC) and the Canadian Cancer Clinical Trials Network (3CTN).
While Michelle is living with Stage 4 advanced metastatic breast cancer, she says she's proud to be standing up and giving people a voice – not only her own community, but the many others that need representation as well.
"When we're talking about groups that have been historically undeserved, we need to make sure their voices are being brought to the forefront since they've never been heard before," Michelle says.
More awareness will lead to more research, and more research leads to change.
"And that's where we are in the world right now," Michelle says.
"That's the power of the patient story."