When Michelle Audoin was first diagnosed with metastatic breast cancer in 2017, she quickly decided a mastectomy was the way to go.
As Audoin prepared for her surgery and reconstruction, she asked to see images of Black people who had undergone the procedure and examples of nipple reconstruction. Audoin remembers growing up, she had some scars that didn’t heal well. Dark skin is more likely to form keloid scars, or raised scars.
“I wanted to see pictures of women who looked like me, who’ve had surgeries like mine, so that I can see how their scars are now following surgery,” Audoin said. In all of the info sessions she attended, brochures and online research, she couldn’t find any.
Though her team tried, they came up short. Audoin had her double mastectomy without ever getting an idea of what exactly reconstruction could look like for women with skin like hers.
“It became really, really difficult for me to process all of this, and to accept the changes for my body. I have these huge scars across my breasts, now. And I can’t accept them,” Audoin said remembering the depression and body image issues she dealt with after her mastectomy.
When Rethink Breast Cancer, a charity Audoin had been part of, pledged to do more to involve Black women in its efforts, Audoin proposed creating a resource that would highlight the physical and emotional scars breast cancer can have on Black bodies. And “Uncovered: A Breast Recognition Project” was born.
Seven Black women, in addition to Audoin, volunteered to participate. With a creative team made entirely of Black women, the group shot a video and portraits displaying their scars for the project, as well as shared what their journey through their various forms of breast cancer has been like.
Ahead of the shoot, Audoin said, “I was nervous, unsure of myself, scared, anxious.” But she said working with the photographer, and finding, “flattering poses, in spite of my scars” allowed her to “see myself as beautiful in those images (and) really changed how I feel about myself.”
Rethink has been distributing the project to different branches of the cancer care community so it can be a resource to have at their disposal for Black patients and patients with darker skin.
MJ DeCoteau, founder and executive director of Rethink Breast Cancer, said that knowing what to expect as they embark on breast cancer treatment is “huge for women.”
Rethink conducted a national needs assessment for young women with breast cancer in 2015 and it showed that preparation and awareness of what is going on throughout their treatment led to them coping and managing side effects better across the board. “(It) showed us that every step of the way, being prepared for what was about to happen, helps them cope,” DeCoteau said.
DeCoteau said that in talking with Black-led breast cancer organizations in the U.S., she heard that the lack of surgery imagery is a problem even there, where the Black population is larger than in Canada.
In the U.S., while Black and white women are diagnosed with breast cancer at similar rates, Black women are 40 per cent more likely to die from the illness. Statistics that include race are not collected in Canada.
McMaster University biologist Dr. Juliet Daniel studies triple negative breast cancer, an aggressive form that disproportionately affects Black and Latin women; she is also a breast cancer survivor herself. She said race-based data needs to be collected and there should be more representation across the board from the physicians administering treatment, to awareness campaigns and support resources like Uncovered.
“You suddenly realize you’re not alone, (there are) other women that are coping with this,” said Daniel.
In the future DeCoteau said there is hope to add to the Uncovered project and bring recognition to other groups that have not been recognized well with the breast cancer care community, such as Indigenous women, or women who are socio-economically disadvantaged.
“What became apparently clear to me is that it’s a systemic issue,” Audoin said. “It’s not that anybody was trying to deny me images, it’s just that nobody ever thought that this mattered.”
Angelyn Francis is a Toronto-based reporter for the Star covering inequity and inequality. Her reporting is funded by the Canadian government through its Local Journalism Initiative. Reach her via email: firstname.lastname@example.org
Angelyn Francis, Local Journalism Initiative Reporter, Toronto Star