BRIGHTON, UK—In underserved communities throughout the world low rates of early breast cancer detection are key drivers of mortality, according to the findings of research from Uganda, the United Kingdom and Nigeria. A range of low cost community-based interventions could be used to modify these drivers, the research concludes.
Huge reductions of breast cancer mortality in underserved communities could be achieved by prioritizing early detection, according to lead author Deborah Ikhile PhD, from the Brighton and Sussex Medical School at the University of Brighton in Sussex UK, who discussed the implications of her findings with the Audio Journal of Oncology’s Peter Goodwin at the Royal Society of Medicine’s 2023 Tackling Inequalities conference. This could be achieved—even where costly mass screening was not possible—by health education delivered through existing social and cultural structures that were presently being overlooked or ignored, her study concluded.
“Breast cancer is beyond an individual disease,” said Dr. Ikhile. “Doctors, researchers, clinicians, decision-makers need to have in-depth understanding of the social determinants that influence a woman’s ability to present early or not.”
Her group’s five-year survey with structured interviews among women in rural and semi-rural communities of Uganda had concluded that ‘structural violence’ was a root cause of late breast cancer detection.
This consisted of multiple disservices to women, unintentionally perpetrated through inappropriate medical care structures. Poor health education plus myopic national, global and donor priorities, all combined with negative attitudes to women, and a failure to engage with the well-established grass-roots local organizations in the community.
According to Dr. Ikhile, existing local services and social infrastructures could be harnessed to turn around breast cancer detection.
The present-day two-fold excess of mortality from breast cancer among most black African women everywhere (as compared their white counterparts in privileged communities) could largely be eliminated by effective early detection. It was necessary to overcome factors such as stigma, misogyny, fear and gender prejudice from the global level downwards. She believed Uganda was not exceptional and that the findings were relevant to cancer detection in underserved communities everywhere.
Dr. Ikhile’s interest in getting to the bottom of breast cancer inequalities began when she was still living in Nigeria and had (what turned out to be) a benign breast lump. Because she had access to private medicine her parents were able to get prompt diagnosis, followed by surgical excision. But this sensitized her to the plight of millions of women in low-resourced communities who did not have access to private health care.
The research in Uganda sought to identify the challenges and barriers to breast cancer detection and to investigate how these issues could be addressed within a primary care context.
The findings showed that cancer in Uganda was beyond individual control. “What came out is that, beyond your lack of knowledge, your lack of awareness, beyond fear, beyond attitude: Other factors, like community support, primary care services, even the clinician’s pressures, all these factors come into play, and support us to look at a holistic view to breast cancer detection,” Dr. Ikhile said. The survey also found that even after eventual detection of breast cancer there was often no easy access to follow-up care and services.
The whole agenda surrounding campaigns such as the Early Detection Saves Lives initiative had been flawed, as these had often centered around victim-blaming—making it seem as though the women were responsible for not detecting breast cancer early. But this was not a reality for most women, according to Dr. Ikhile. “The reality for women is that they want to know. They felt disempowered because of the lack of knowledge.”
“What came out of the interviews was a lack of awareness: Of what breast cancer is, of the signs and symptoms, even the risk factors, and even how to go for screening, how to detect breast cancer. And fear actually came up as a huge issue. They saw cancer as a death sentence, like: If I get breast cancer I’m going to die.”
Dr. Ikhile also highlighted the issue of stigma. Women were afraid to go to national cancer screening services for fear of being stigmatized as cancer victims, she said. “So, even if screening were organized they would not go, just because of that perception of being assumed to have cancer.”
Dr. Ikhile’s research uncovered a very low level of knowledge about breast cancer and what to do if you suspected you had it, she said. This was very different from the UK where she had studied black African women living in a typical city in the English Midlands, Nottingham.
“They were generally aware of breast cancer,” she said. This was a stark contrast to some of the local communities she had studied in Uganda, where she learned there was not even a local word for breast cancer. “So even [with the signs] they really don’t know what disease it is, because they don’t understand what it means in the local language.” And fatalism contributed to lack of action against breast cancer, often linked to spiritual or religious beliefs.
When she was asked to explain what structural violence consisted of in the study community, Ikhile said the concept of structural violence looked at the way government and local service structures were partnered to help perpetuate the health or sickness of individuals.
“There were a lot of underlying factors. It is not enough to say that a woman does not know enough about breast cancer. It is not enough to say a woman has fear,” she said. “So, the study sought to find what perpetuated that fear, and what were the underlying factors promoting or influencing that lack of knowledge.”
“One of the factors that came out was that there was no cancer policy in the country. Uganda did not have any national cancer policy at the time of the study.” This resulted in no national strategy or direction to guide how cancer should be controlled in the country.
Medical priorities were also found to be inappropriate for breast cancer. For one thing communicable diseases were in competition with cancer for resources. To make matters worse, most of the priorities in Uganda were driven by international donors, said Dr. Ikhile, which—despite being well-intentioned—were not sufficiently well-informed about the true needs of the people. For example: Funding for HIV would inevitably prioritize HIV and donors targeting cardiovascular disease would similarly not have cancer in their sights. Breast cancer was clearly being overlooked.
Even donor funding for breast cancer could overlook early detection among widely spread—often rural—communities, in favor of breast cancer treatments which were not even appropriate for many patients with the late stages of breast cancer frequently forming the majority of those eventually diagnosed in these underserved communities.
And the benefit of costly screening programs had to be questioned, according to Ikhile, who favored education programs.
“What is important is knowing your breast,” she said. This was in a context of the study findings that most women interviewed did not even know that breast lumps could be a sign of breast cancer. And they were even being wrongly advised by primary care teams, who were also insufficiently knowledgeable about breast cancer. Women needed to know that any changes in their breasts indicated that they should find help.
Gender norms and gender roles could also inhibit actions needed for detecting breast cancer, the study found. Traditional values about the place of women in society and deference to men could negatively influence breast cancer outcomes, particularly in rural communities.
But there was a positive finding from the research. ”Sensitizing men as champions for women’s health could be a great motivator for women, wives, daughters, mothers, who could then seek care.”
Awareness was the key to resolving these issues, said Dr. Ikhile. This needed to be among all members of the community: women, husbands, and health-care practitioners. “What is important is understanding the social and cultural environment and the factors that influence ability to seek or not to seek help.”
She also stressed ‘cultural competence’ among doctors: “Knowing how to deliver care in a culturally competent manner, interacting with a woman in a way that won’t lead to fear. It is very important to know where your patient is coming from,” she said.
Happily, in the case of African communities there were often strong social bonds and structures that were available to be harnessed, said Ikhile. “So, they can use those pathways to create awareness and use organizations like churches and community health workers who are trusted people. She also saw the need for doctors to be very much part of the community health awareness strategy, rather than being left in ivory towers to treat patients only after diagnosis.
Dr. Ikhile regarded grass-roots understanding of the local communities, and engagement with local organizations, as bedrocks of a plan to achieve timely detection of breast cancer. “It is very important for donors to engage and work hand-in-hand with those actually on the ground to implement any of the projects,” she said.