Michelle Audoin joined OICR’s Patient and Family Advisory Council in May 2023.

In the days after Michelle Audoin was diagnosed with metastatic breast cancer in 2017, she wrestled with some of the biggest questions of her life.

But she didn’t see herself, or other women of colour, in the answers.

Audoin had to decide whether to have a double mastectomy as part of her cancer treatment and wanted to know more about breast reconstruction outcomes for Black women like herself. She knew that her scars didn’t heal the same as people with other skin colours. But the resources she was provided featured only images of white women.

“I wasn’t seeing people who looked like me, and I wasn’t getting the information I needed,” she says. “That made it really hard to come to terms with the decision and led to depression after I went forward with surgery.”

Audoin knew she couldn’t be the only woman to feel excluded, so she decided to do something about it. In 2020, she worked with a charity called Rethink Breast Cancer to create a resource specifically for Black, Indigenous and People of Colour (BIPOC).

Uncovered: A Breast Cancer Recognition Project features portraits and stories of BIPOC women after breast reconstruction, including Audoin, and a list of actions healthcare organizations can take to make breast cancer care more inclusive.

After presenting Uncovered at World Cancer Congress in 2022, Audoin has taken on other projects to advocate for cancer patients, including working with the University of Toronto and Women’s College Hospital. She joined OICR’s Patient and Family Advisory Council (PFAC) in May 2023, and recently spoke to OICR News about her goals and motivations as a patient partner.

How has being a Black woman shaped your experience with cancer?

I’ve seen racism and implicit bias along my healthcare journey, even before my cancer diagnosis. I had my first breast cyst removed at 14 or 15 and there was no follow up from the healthcare system about my cancer risk factors or how to manage my breast health.

Since getting cancer, I have often felt there were barriers to accessing the resources I needed. My questions and concerns have sometimes been dismissed, and I haven’t felt like an equal partner in my care.

How did these experiences motivate you to become an advocate for patients?

I had a difficult journey with my mastectomy and did a lot of journaling afterward about my feelings. Eventually, I stopped writing about being angry and started writing about how I would want the experience to be different for someone else – my sister, my neighbour or my child. I started writing down ideas and reaching out to organizations. That’s how the Uncovered project came about, and that led me to other advocacy and patient partnership opportunities.

Why did you put your name forward to join OICR’s PFAC?

For me, it’s about giving back. I’ve had a lot of experience throughout my diagnosis, both good and bad. I feel compelled to use those experiences to make change and improve outcomes for people like me. OICR provides a great opportunity to make that kind of difference.

In cancer research, people talk a lot about personalized medicine. But personalizing cancer treatment isn’t just about targeting a specific type of cancer. Personalized medicine needs to acknowledge that patients are individuals and we come with complex backgrounds. As a mother in my 40s, my priority for cancer treatment is to have good quality of life with my kids. Someone else may want to do everything they possibly can to get rid of cancer. We all have different values that influence how we want to be treated.

What sort of impact do you hope you can have as a patient partner?

I want to bring the patient voice to the forefront of people’s work, whether they’re in health research or healthcare. Hopefully that brings about a more inclusive, humanist health system that treats patients as individuals, not as their diagnosis.

I’m very grateful that I live in Canada and that our country offers world-class cancer care. But the system still does harm sometimes, even when people are trained to do good. We can do better, and the patient voice is at the centre of the improvements we need.