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:
- ACTION Study with Dr. Tulin Cil and Dr. Funmi Wuraola: Dr. Tulin Cil, a surgeon and researcher at the Princess Margaret who holds the Gattuso Chair in Breast Surgical Oncology, is researching the feasibility of performing saliva-based genetic testing for BRCA 1 or BRCA 2 among Nigerian women predisposed to have breast cancer. Nigerian women are diagnosed at a younger age and later stage of cancer compared to their North American or European counterparts, and yet have limited access to genetic testing. The study is also exploring perceptions of hereditary breast cancer testing and genetic counselling among doctors and patients in Nigeria, as well as developing tailored, culturally safe educational materials. Overall, the study aims to improve outcomes for patients, identify knowledge gaps for health care providers and add to the literature on breast cancer globally. Dr. Cil hopes it will lay the foundation for genetic breast cancer testing as a standard of care in Nigeria. The study is a collaboration with Dr. Wuraola at the Obafemi Awolowo University Teaching Hospital in Nigeria.
- Lived Experience of Black Women with Breast Cancer with Dr. Andrea Covelli: A research study led by Dr. Andrea Covelli, a surgical oncologist at the Princess Margaret, focused on developing a better understanding of the experiences of Black women diagnosed with breast cancer in Ontario. To improve doctor-patient communication, this study dives into the importance of diversity and equity in cancer care for this population and the negative impacts of biases.
- Project Empathy: Project Empathy is a series of supportive communication videos that were co-developed with oncologists to create an accessible, effective, and engaging learning resource for oncologists to improve empathic communication throughout all stages of the cancer trajectory. This resource consists of a series of short cinematic vignettes that depict the challenges in dialogue between oncologists and patients, as well as the effective strategies oncologists can use to reengage patients in a more supportive and empathic way. The vignettes have been developed through an IDEAA lens to illustrate the importance of communication with diverse and underserved communities. In collaboration with Princess Margaret Cancer Education, these videos will be packaged and designed as a micro-learning communications course for providers to access in Spring 2024.
- Addressing Radiation Skin Toxicity Amongst Black Patients with Breast Cancer, with Dr. Melinda Mushonga: Dr. Melinda Mushonga is an early career clinical oncologist who trained in radiation oncology at the University of Zimbabwe. She enrolled in a Radiation Oncology Clinical Fellowship at University of Toronto and conducted research with Dr. Danielle Rodin. With breast cancer being one of the most common cancers in Zimbabwe, access to care is difficult with only 34 per cent of eligible patients receiving post-mastectomy radiation. Among other factors, treatment-related side effects such as radiation dermatitis have not been studied adequately. She found that prior studies were conducted mostly in countries where the majority of patients are white, and studies have noted that Black patients have more severe radiation dermatitis. Dr. Mushonga's work aims to identify the skin toxicity rates reported by physicians and perform a questionnaire with patients reporting their own symptoms – the latter potentially revealing a higher prevalence compared to physician-reported levels as patients may identify changes in their skin that would be missed by clinical grading techniques. Dr. Mushonga was also consulted in the making of the Project Empathy short film. She was awarded an ASCO Conquer Cancer Young Investigator Award for her work investigating radiation-induced skin toxicity in Zimbabwe.
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.
Today, 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."
This story first appeared on UHN News