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uncovered: a breast recognition project shines a light on inequities in the cancer care system
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“i did not see my body as whole," said michelle audoin after she underwent breast reconstruction. supplied
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as a black girl growing up in toronto, michelle audoin had become inured to seeing white faces staring back at her from the covers of magazines, on television shows and in movies. but when she fell down the dizzying rabbit hole of the health care system after finding a lump in her breast when she was just 14, she discovered a trend far more troubling than the predictable white faces on cancer information brochures.
for too long, the experiences of people of colour in the cancer care system were glossed over. many women like audoin felt they were not seen, heard, or listened to — and worse, felt misjudged and misunderstood by their health care team.
while there is limited data available for canada, a study last year by the journal of the american medical association found the risk of breast cancer mortality in black women was significantly higher than white women, due in part to disparities in access to treatment and surgery options. combined with cultural taboos that can prevent open dialogue about breast cancer, people in these communities fell so far between the cracks it sometimes felt as if they didn’t exist.
uncovered: a breast recognition project was born out of a lack of representation of bipoc in breast cancer images and stories. supplied
‘you just have lumpy breasts’
the tumour audoin discovered at 14 was removed and, luckily, it was benign. but it left a raised scar on her right nipple, a constant reminder of the potential for cancer. “there were never any follow-up discussions about what to look for, what my risks were.”
as she grew into adulthood, she learned to do self-exams from magazines, and whenever she felt a suspicious lump, she had it checked. “i was told i just had lumpy breasts and it was nothing to worry about.”
it wasn’t until she was nursing her son that she noticed a lump that had already been ruled out as harmless. but it felt different, so she pressed for more tests. mammograms showed nothing, but she continued to press for more testing, and eventually underwent a series of ultrasounds and biopsies, which revealed a cancerous lump. “they told me it was stage 0 and i didn’t need surgery,” she recalls. “but the fear of that 14-year-old girl was still in me, so i decided early on to have a bilateral mastectomy.”
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while prepping her for radiation, doctors discovered lesions in her lungs, which led to a diagnosis of stage 4 breast cancer and thyroid cancer.
the realities of reconstruction
after the mastectomies, audoin underwent breast reconstruction, which included the removal of both her nipples, and the insertion of tissue expanders and eventually implants. “by 2020, i was still struggling, depressed and really rejected my reconstructed breasts,” she says. “i did not see my body as whole.”
had she been prepared for what they would look like, if she had heard other black women’s stories or seen their pictures, she might have had an easier time during this period, she says. she had attended patient information sessions, but all the brochures and images featured the bodies of white women. so she did a google search for black images and couldn’t find one. “i was told not to worry about it because these things always look great on black women. that’s when things derailed and i began to realize the system wasn’t set up to meet the needs of black women.”
an idea uncovered
in 2020, as the world was focused on the murder of george floyd and the black lives matter movement, audoin approached the advocacy group rethink breast cancer with an idea: create a resource for black, indigenous and people of colour (bipoc) with breast cancer to see themselves reflected back in the stories and images of people just like them. at the same time, such a resource would shine a light on the inequities in the health care system, as well as providing a call to action for those who work within it. in 2021, the first edition of uncovered: a breast recognition project was born.
as proud as she is of the finished product, audoin says the photo shoot was hard. “i hadn’t shown my body to anyone and here i was literally uncovering my body with somebody taking pictures of it. it wasn’t until the photographer showed me the first few pictures that i saw myself as whole and beautiful,” she says.
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“i watched the other women come in looking a lot like me, confused, scared, not knowing what to expect. and then seeing the change in their facial expressions afterwards — feeling overjoyed, beautiful, empowered. and to read their stories and realize that there was a community, that my experience was not an isolated one, that there’s other women who can relate to what i was going through, was very empowering.”
mj decoteau, founder and executive director of rethink breast cancer, says she “still get[s] chills” thinking about when she first heard audoin’s idea for uncovered.
“it was hard to hear her experience, but when she shared her idea, i thought, the power in this simple idea,” decoteau says. “it was important to michelle to celebrate as much as shine a light on the challenges and needs and the opportunity to make change. i love that uncovered recognizes the beauty of these incredible, brave women who came forward with their experiences and stories.”
jasmine sikand, lead of content, community & collaborations at rethink and producer of uncovered, doesn’t have breast cancer herself. but the project still resonated with her. “it was meaningful for me as someone who is half-indian, having experienced cultural taboos around health,” sikand says. “it has always been shameful to talk about, especially as women and especially with something like breast cancer. there’s that lack of awareness of any family history, there’s shame and blame that you did this to yourself.”
sikand has already seen the impacts of the project, she says, not only for other people and patients who resonate so deeply with these stories through their own experiences, but also the effect it is having on the health care system. “various breast surgical oncologists have learned about this project and then integrated some of the learnings into their practice. we’ve also had requests for presentations at hospitals, and for the uncovered resource to be displayed in clinics.”
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uncovering diverse voices
caroline falaiye, who is nigerian-canadian, was diagnosed with stage 2 invasive ductal carcinoma at 44, the same age her mother was diagnosed with breast cancer. her mother died two years later, at the age falaiye is now. “it’s always in the back of your head but it was still shocking when i got that news,” says falaiye, whose cancer was not detected via mammogram, but by ultrasound and biopsy. “i was told i was low risk [so] i didn’t think it would happen to me. but it did.”
falaiye had read audoin’s story in the first volume of uncovered. “i was angry, proud, sad and also wanted to get involved, to share my experience as well,” she says. “reading her story was upsetting because i had a different experience.”
caroline falaiye, who is nigerian-canadian, was diagnosed with stage 2 invasive ductal carcinoma at 44. supplied
falaiye says she had a u.k.-trained oncologist who took the time to explain what she would go through as a black woman; the pigmentation changes she would have as a result of surgeries. “i felt that this should be the norm. that’s why i got involved, to say this is the standard of care that should be demanded and expected by all of us.”
and similar to what sikand said, it was important to falaiye to share the way her story is embedded in her own background. “[in the west african culture] when any type of illness, particularly cancer, strikes a family, it’s not talked about. but if you don’t talk about it you can’t get help or support,” she says. “michelle gave us permission to talk about our experiences. it’s an important first step in making any kind of meaningful changes.”
following chemotherapy, falaiye’s tumour shrunk until it eventually disappeared. but she’s still closely monitored for any recurrence. “regardless of what comes next, i’m ready for it knowing i’m not alone,” she says.
as for audoin, she doesn’t sugarcoat her experience with her 15-year-old daughter and seven-year-old son. “having felt shame about my body from the age of 14, i’d never shown my reconstructed breasts to my daughter,” she says. “the first time she saw them was when i brought home a copy of uncovered. she was so happy to see her mother advocating for change, and to see the stories of other women showing up for each other during a very difficult time in their lives.”
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robin roberts is a vancouver-based writer.
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