Outside the margins: BIPOC and LGBTQ2 breast cancer patients rewrite the narrative
Charlene fought for years to have her pain and high-fever symptoms taken seriously by doctors. So long that even she even began to take their doubts to heart. Maybe there really was nothing wrong with her.
But 15 doctors and two-and-a-half years later, her fears were finally validated. She was diagnosed with Hodgkin lymphoma in 2015 at 37-years-old, and then with non-Hodgkin lymphoma in 2016.
The confirmation of a diagnosis is usually where a person’s cancer journey begins, not nearly three years after, but that was the case for Charlene — a Black woman who was forced to advocate for her life in a health-care system that would not listen to her.
Charlene, who asked that we only use her first name, spoke to Global News about her ordeal trying to get a definitive diagnosis.
“During those two-and-a-half years, it was a lot of visits to the emergency department and me feeling like I wasn’t being heard,” Charlene described. “There were a lot of judgments on the health-care providers’ parts.”
She spoke to over a dozen doctors, none of whom were Black, before she was able to get a biopsy done that confirmed she had cancer. During that time, she says doctors racially stereotyped her and judged her for her body size.
Charlene says it began with her family doctor. She came in with pain symptoms looking for answers, but instead, her family doctor questioned if her symptoms were even real.
“All you people want are drugs,” Charlene remembers her doctor saying.
Because her symptoms largely centred around experiencing pain, her family doctor believed that she just wanted stronger and stronger painkillers.
“In between me advocating for myself with my family doctor, there were times where I was in so much pain that I had to go into the emergency room,” Charlene said.
And so began the two-year long process of regular ER visits and meetings with specialists that amounted to nothing. Initially, ER doctors believed Charlene had kidney stones, but a CT scan showed that she was suffering from enlarged lymph nodes.
Pain, fever, and enlarged lymph nodes are telltale symptoms of Hodgkin lymphoma, but Charlene was repeatedly told that she was too young, at 37, to have cancer. She was prescribed antibiotics and sent home.
Before experiencing cancer, Charlene was diagnosed with anxiety and depression — and trying to access health care was proving to be detrimental for her mental health.
“My anxiety was like, way, way up there, because I knew something was wrong, and no one was listening to me,” she said.
She was finally diagnosed after meeting an ER doctor who took her seriously. She had come in with a swollen stomach and the doctor referred her to Princess Margaret Cancer Centre in Toronto.
From there, she had a biopsy done and finally got the official diagnosis of Hodgkin lymphoma. At that point, her cancer had advanced to stage three. The first thought she had after getting the news wasn’t about death or sorrow about her own situation, but, instead, the idea of her niece and nephew growing up without her.
Hodgkins Lymphoma survivor talks about concern for family amid battle with disease
Charlene’s story of fighting for her symptoms to be taken seriously is not uncommon for Black women. Research from the U.S. found that Black patients are often diagnosed at more advanced stages of cancer than white patients, and when tumours are found in Black patients, they tend to be more aggressive and further along.
According to the American Cancer Society, Black people have the highest death rate and shortest survival of any ethnic group for most cancers About a third of Black women reported experiencing racism during a medical appointment. A significant body of research has found that institutional bias and racism is a primary driver of racial health disparities. Canada does not collect national race-based data, meaning that research into Canadian racial disparities in health are few and far between.
Even worse, when Black people are diagnosed at later stages, it has deadly consequences. A 2020 study led by Queen’s University examined over 1.2 million cancer patients and found that people whose cancer treatments were delayed by even one month had a six to 13 per cent higher risk of death. A three-month delay amounted to a 26 per cent increased chance of death.
In Charlene’s case, the delay in her diagnosis meant that her cancer care was a longer, more arduous process than the other people she met with the same type of cancer. She underwent seven months of chemotherapy and a harrowing two years of immunotherapy.
Even during her treatment process, Charlene still had to contend with discriminatory health-care providers. She said she had to switch oncologists after the first oncologist she was paired with made judgments about her weight.
“He was saying, ‘Oh, you have cancer because you’re overweight,’” Charlene recalls. “And I’m like, ‘So you’re trying to tell me that it’s my fault that I have cancer?’”
His comments made her feel uncomfortable. While there is a correlation between higher weight and an increased risk of cancer, that does not imply causation.
“That’s the last thing I need to go through,” she said. “When I’m trying to fight for my life and I’m in treatment. I don’t need someone making me feel like this is my fault.”
Weight stigma remains an active form of discrimination in public health and can make it harder for people in larger bodies to get proper healthcare because of misdiagnoses or even visit a doctor because of fear of judgment, according to a University of Chicago policy brief.
Weight stigma has also been linked to racism and colonialism in North America, with the historical desirability of thinness emerging as a means for white people to show their perceived racial superiority over Black people, according to an award-winning publication by Sabrina Strings, a sociology professor at the University of California, Irvine.
Before Charlene was diagnosed, she also had doctors telling her that her symptoms would abate if she lost weight, even though some public health reformers argue that weight loss is not an effective medical strategy.
With the cards stacked against her, Charlene had to fight for a basic standard of care that should be guaranteed to all Canadians.
“If I didn’t advocate for myself and push really hard, I probably wouldn’t be here right now,” Charlene told Global News. “And if that’s my story, then there’s probably other people out there who have the same story that are not here.”
While Charlene’s case is extreme, many other people of colour have found that the institutions of cancer care were not built with them in mind.
Michelle Audoin is the creator of the Uncovered Breast Recognition Project, which celebrates and amplifies the stories of Black, Indigenous and women of colour with breast cancer. When she decided to get a bilateral mastectomy (the removal of both breasts) her doctors weren’t able to show her images of Black women with reconstructed breasts or what scarring from the surgery might look like on Black skin, even though darker skin is more likely to form keloid scars.
“I really felt like my issues didn’t matter. And I didn’t feel confident in making a decision about a life-changing surgery because I didn’t see myself represented,” Audoin told Global News. “The fact that I didn’t see myself in this space and my questions weren’t being addressed, it led to depression.”
Much like Charlene, Audoin also had to advocate for herself to receive an appropriate level of care. She was initially diagnosed with early-stage breast cancer in 2017 at age 40 and was glad to tell her two young children at the time that everything was going to be OK.
Audoin pushed for more tests to be done, however, just to be sure. They revealed that her so-called early-stage breast cancer was actually Stage four and had spread to her thyroid.
“So I was diagnosed with two cancers, with metastatic breast cancer being untreatable and curable at that time,” Audoin said. “That was a big shift to go from telling your kids, ‘Everything’s going to be all right,’ to going home and then saying, ‘I’m sorry. Mom has an incurable cancer.’”
After Audoin’s mastectomy, she describes feeling dissociated from her body and her chest.
“I looked at myself from the chest up and from the chest below. I could not accept my reconstructed breasts,” she said.
From there, the Uncovered project was born. Audoin held a photoshoot for herself and other women of colour who had experienced breast cancer to reconnect with their bodies and share stories of their cancer care experience.
“It wasn’t until the photographer turned the camera around and showed me the first few pictures of myself that I started weeping and I finally saw myself as beautiful and whole,” Audoin describes.
The second edition of Uncovered, which was published in 2021, is available online as a resource for cancer survivors and medical practitioners alike to understand and connect with the unique challenges that women of colour face in breast cancer care.
One woman who shared her story with Uncovered, Rhea, who is South Asian, had a similar experience to Audoin and was not shown what mastectomy scarring would look like on darker skin. When her skin reacted differently to surgery and radiation treatment than what she expected — since she was shown examples of white skin — she booked an emergency appointment because it alarmed her so much.
After waiting three hours in fear to see a doctor, she was told within five minutes of entering the examination room that her scarring looked “normal.”
“This single experience had a profound effect on me. It made me feel marginalized by my cancer team,” Rhea wrote for Uncovered. “Here at a major Toronto cancer centre, my specialists were choosing not to truly see me.”
Another woman, Vicky, who is Inuk, wrote to Uncovered about how her first surgeon was dismissive and didn’t provide any options for her care, deciding instead to tell her what she needed to do with her treatment.
She switched to a different surgeon and cancer team and was able to find a hospital that had an Indigenous Patient Navigator and Elder on-site to support her. She said having these resources “was immeasurable to me feeling grounded and supported, having someone by my side who understood.”
Investing in the cultural safety of hospitals and ensuring that people of diverse backgrounds feel heard and understood in medical scenarios is an imperative step that Canada can take to improve healthcare for people of colour. According to Angeline Letendre, an Indigenous scientist that works for Alberta Health Services, this is especially the case regarding Indigenous people.
Letendre, a Métis woman, is a national co-chair of the Canadian Indigenous Research Network Against Cancer (CIRNAC), which seeks to improve cancer care for Indigenous people living in Canada, and has been a registered nurse for over 30 years. Throughout her long career, she has witnessed Indigenous people use the Canadian health-care system as a last resort, instead of a place for healing and preventative care.
“This is one of the reasons why we have Indigenous people coming in when they’re at late stages of disease,” Letendre said, explaining that Indigenous people often face racism while accessing healthcare, which discourages them from seeking treatment. She brought up the case of Joyce Echaquan, an Indigenous woman who died in hospital after filming hospital staff mocking her.
Joyce Echaquan would still be alive if she were white, says coroner
While making hospitals a more inclusive and diverse place can improve patient comfort, it won’t address the root causes for why Indigenous cancer mortality rates are higher for non-Indigenous patients.
While the availability of screening data for Indigenous people is slowly improving, Letendre says that in her home province of Alberta, many of the top cancers that affect Indigenous people are primarily driven by infectious disease.
“That is hepatitis C that can lead to liver cancer, the HPV infection that is, in general, the biggest cause of cervical cancers, and the H. pylori infection, which is a cause for stomach cancers,” Letendre said. “And so the top 10 cancers for First Nations and Indigenous peoples… are different than the top 10 cancers for the non-Indigenous populations.”
Letendre says this is due, in part, to the lower standard of living that many Indigenous people are subjected to, listing “poverty, lack of clean water, lack of nutritious foods, overcrowded housing, and remote locations, where service providers are becoming even more of an anomaly,” as factors driving cancer rates and increased mortality in Indigenous populations.
Addressing these social determinants of health are necessary to improving health outcomes for Indigenous people, Letendre says.
But combatting issues like poverty and housing are inherently political, and don’t come with polished tag-lines like “Run for the Cure,” as memoirist and lawyer Kimiko Tobimatsu points out.
Tobimatsu, a queer and mixed-race woman, was diagnosed with breast cancer at age 25 and wrote about her experiences in a graphic novel called Kimiko Does Cancer. She told Global News that she feels alienated from most cancer philanthropy like Pinktober — when businesses and organizations roll out themed products, social media campaigns and fundraisers in October for so-called breast cancer awareness and education — because of how corporations have taken over the movement.
“Cancer gets a lot of money, I think partly because we are, almost all of us, affected by it in some way, either direct experience or through folks that we love,” Tobimatsu finds. “But also, it gets a lot of corporate sponsorship… sometimes focusing on cure rather than prevention and that more complex understanding of who gets cancer and how it affects them.”
“Thinking about folks that should be able to work here and get status here, or thinking about poverty and homelessness and precarious employment,” Tobimatsu continued. “All those somewhat messier issues sometimes lose out on funding because we’ve got this glossy cancer message.”
Everyone deserves to access life-saving medicine, and Canada’s health-care system goes a long way in ensuring that cancer patients do not need to go bankrupt in order to be treated. But it’s clear that money is not the only barrier stopping Canadians from leading full and healthy lives.
The experiences of Black, Indigenous and POC cancer survivors serve as a sober reminder that sometimes conquering cancer isn’t the only obstacle.
Against All Odds: Young Canadians & Cancer’ is a biweekly ongoing Global News series looking at the realities young adults face when they receive a cancer diagnosis.
Examining issues like institutional and familial support, medicine and accessibility, any roadblocks as well as positive developments in the space, the series shines a light on what it’s like to deal with the life-changing disease.