Poor symptom awareness and acknowledgment of risk factors, poor understanding of breast cancer, empowerment and confidence, and a lack of confidence in healthcare professionals/systems are four barriers encountered by African American women in triple-negative breast cancer. These barriers contribute to late presentations and poor outcomes among this population group.
Triple Negative Breast Cancer
- Triple-negative breast cancer makes up approximately 17% of breast cancer diagnoses globally.
- The incidence in African American women is higher than the global average, with it occurring in 39% of premenopausal African American women diagnosed with breast cancer.
- Triple-negative breast cancer occurs at an incidence of 47% in African American women compared to 22% in white women.
1. Poor Symptom Awareness and Acknowledgment of Risk Factors
- A recent meta-analysis of barriers to early presentation and diagnosis with breast cancer found that only 22% of African American women felt they were susceptible to breast cancer before diagnosis. This is compared to 44% of white women.
- Only 16% of African American women are likely to recognize a non-lump symptom of breast cancer. This is compared to 22% of white women.
- One study found that there is a perception among African-American women that breast cancer is a white women’s disease. This results in an underestimation of the risk factors of breast cancer among the African American population.
- As a result of underestimating the risk factors, the diagnosis and presentation are often delayed in African American women.
- In another study, when risk was discussed at a focus group, one participant said, “I feel like the way they display it to us, like on television or even down to our relatives, I’ve heard words like, well, you know that’s not common for Black people. It’s very rare. And like I say when you look at the media, you typically see Caucasians in the commercials. You might see one Black girl.”
- The lack of African American women in visual advertising has contributed negatively to their perceptions of risk.
- A separate study found that African American women are more likely to tolerate or ignore symptoms because of the poor perception of risk. One participant said “At first, I tried to ignore my pain, but it continued to get worse.”
- To address the diagnosis and treatment of breast cancer in African American women, issues around the perceived risk of breast cancer must be addressed.
2. Poor Understanding of Breast Cancer
- 78% of African American women minimize the impact of breast cancer.
- Three separate studies have found that between 77% to 98% of African American women do not believe that death was a possible outcome of breast cancer.
- Another study found that only 13% of African American women believed that possible death was a consequence of breast cancer.
- In a focus group of African American women, only 15% had heard of triple-negative Breast Cancer.
- The group was asked about a range of breast cancer-related terms and topics, 6% had never heard of any of the terms or topics raised.
- A focus group of African American women was asked about the causes of breast cancer. Responses included mammograms, ovaries, hormone levels, sexuality, and spirituality, illustrating some of the poor understanding in this demographic about breast cancer.
- A separate focus group listed smoking, breast injury, poor diet, lack of exercise, stress, hormones, birth control, radiation, asbestos, wearing a bra when sleeping, age at childbirth, and the environment as potential causes of breast cancer.
- Lack of family history is often considered a reason not to be concerned about breast cancer.
- This contributes to risk minimization and creates a barrier to diagnosis and treatment.
- Addressing the poor understanding of breast cancer is key in improving breast cancer diagnosis and treatment rates in African American women.
- One study found that there is a lack of understanding among African American women of what constitutes a symptom of breast cancer. For example, the presence of pain was a reassurance to some participants that it was not breast cancer.
3. Low Confidence in Healthcare Professionals/System
- Low confidence in healthcare professionals contributes to a reluctance by African American women to obtain a breast examination from a doctor or undergo a mammogram.
- Only 18% of breast cancer is diagnosed by mammograms in African American women compared to 31% in white women.
- Only 8% of breast cancer is diagnosed from a clinician breast examination in African American women compared to 21% in white women.
- One study found that 57% of African American women believed treatments for breast cancer were worse than the disease itself.
- In a recent study, 14% of women raised issues of barriers to accessing mammograms for breast cancer screening. African American women were less likely to raise these barriers with medical professionals compared to white women. Mistrust of the healthcare system contributed to this.
- Evidence suggests that African American women lack confidence in healthcare professionals. One of the main reasons for this is previous breast symptoms being misdiagnosed.
- Reports of the medical profession downplaying symptoms. Comments like,”It’s just cysts, it’s nothing to worry about” were a basis for the mistrust resulting in delayed presentation and treatment.
- A qualitative study found that African American women consistently expressed concerns over the standard and type of care they would receive if diagnosed. They also expressed concerns over discrimination against African Americans in the medical system.
- The fear of substandard or overly aggressive treatment is prevalent. One participant said, “she wound up with a mastectomy 2 weeks later just because of her mammogram”.
- The long-lasting impact of the Tuskegee Syphilis Trial was cited as a basis for the belief that they would receive substandard treatment by the medical profession. Fear and mistrust are significant barriers to the participation of African American women in clinical trials.
- Four studies have found that there is a perception of racism or discrimination against African Americans from healthcare professionals. Two of these studies found that there was a clear link between that perception and delay in seeking treatment.
- Low confidence in health professionals creates a barrier by making African American women less likely to be active in doctor-patient relationships. This impacts their ability to be proactive in respect to their medical care.
- Mistrust in the medical profession contributes to dissatisfaction, noncompliance, and the under use of healthcare services.
- A lack of African American health professionals has contributed to this mistrust. A participant in a 2010 study encompassed the mistrust when she said, “You know, it’s in our culture, you don’t go tell white people nothing.”
- Three separate studies have reported a reluctance among African-American women to have surgery for breast cancer because of a lack of confidence in the healthcare system. Another study found that silence and mistrust of the healthcare system created a barrier to breast cancer diagnosis.
4. Empowerment and Confidence
- One study found that 55% of African American women would not feel comfortable conducting a breast examination on themselves.
- Family commitments and a lack of time contribute to a delay in African American women presenting with symptoms in 28% of cases.
- The fear of cancer contributes to a delay in presentation in 32% of cases.
- Lack of partner support or a fear of abandonment by their partners if diagnosed has created a barrier to African American women seeking medical advice when experiencing symptoms.
- A separate study corroborated this finding, reporting that the fear of partner abandonment inhibited the likelihood of African American women seeking help.
- In many African American communities, cancer remains a taboo topic, often remaining undisclosed, even to family members. This results in a reluctance to seek medical advice when symptoms present.
- Another study reported that African American women with childcare, employment, and partnership responsibilities would be more likely to delay seeking treatment due to the consequences on their family than those that did not have those responsibilities.
- Feelings of empowerment and confidence are key in seeking medical attention when breast cancer symptoms present.
- African American women are more likely to feel disempowered by the medical system and as a result, have decreased levels of confidence. The long term result is that they are less likely to seek early advice concerning breast cancer.
- By empowering African American women, to navigate the system, through improved access and transparency, the effect of this barrier is likely to be diminished.
- The lack of a feeling of empowerment and lack of confidence among African American women was illustrated in a recent study. It found they were less likely than white women to raise issues about barriers that hindered their access to mammograms.
- The lack of financial resources experienced by many African American women has resulted in feelings of disempowerment. In a study focus group, one African American woman identified the need to attend a public health facility that was overworked, understaffed and under-resourced due to her lack of financial resources as a reason for delayed presentation.
5. Lack Of Access To Treatment
- Between 2013 and 2017, black women had a 40% higher death rate than in white women, despite a slightly smaller incidence of breast cancer in black women.
- African American (AA) women with breast cancer do not usually have access to “appropriate guideline-concordant therapeutic regimens including locoregional treatment, adjuvant radiotherapy, adjuvant systemic therapy, and breast reconstruction.”
- AA women with breast cancer generally have lower participation in clinical trials investigating novel drug combinations than their European American counterparts.
6. Fear Of Cancer Treatments
- 32% of African-American participants with breast cancer reported feeling scared when they discovered their symptoms.
- One study reported that 57% of African-American women with and without breast cancer believed treatments for breast cancer were worse than the disease itself.
- Black and African-American women who were fearful of cancer were significantly more likely to delay seeking a diagnosis than those who were not.
- Black and African-American women reported fearing the implications of cancer treatments and surgery.
7. Sociological Issues
- An academic study provided support from a nurse navigator to women with a breast cancer diagnosis.
- Of the 3,754 women who received that support, 14% said they faced one or more barriers to getting a screening mammogram.
- AA women living below the poverty line were half as likely to report barriers as those living above it.
- The study showed that black women were less likely to report facing barriers to having a screening mammogram. Because no barriers were reported, the women didn’t receive any extra support or help to get a mammogram, even if they needed that extra help.
- A study at BU’s Slone Epidemiology Center revealed that the neighborhood a person lives in, the kind of work she does, and her ability to make ends meet all affect her cancer risk, diagnosis, and outcome.
- A person who has to travel miles by bus to reach the nearest grocery store may not be able to follow her doctor’s advice to fill her plate with leafy greens. A breast cancer patient choosing between paying for her apartment and paying for her prescriptions may forgo critical medicine.
- Where a woman lives may also be more important than what they earn. When it comes to health, the neighbors’ income, employment, and education levels may be more important than their own.
- Blacks are also more likely to live in poverty and to have lower educational attainment relative to whites, factors that are associated with breast cancer stage at diagnosis. Lifestyle factors and environmental exposures may be associated with tumor biology.
8. Lack Of Access To Breast Cancer Screenings(MAMMOGRAMS)
- Of those with no health insurance, 31 percent had a mammogram in the past two years.
- Sixty-eight percent of those with health insurance had a mammogram in the past two years.
- During a study of barriers to mammography use by African-American women, low income and lack of health insurance, pain and embarrassment associated with screening mammography, poor knowledge about breast cancer screening, lack of physician recommendation, lack of trust in hospitals and doctors, and lack of transportation were the most frequently identified barriers.
- The Susan G. Komen Foundation lists the following barriers to mammography: lack of access to care (such as lack of a local (or easy to get to) mammography center or lack of transportation to a mammography center), lack of a usual health care provider and therefore no opportunity for a recommendation for a mammogram from a provider.
- Other barriers from the foundation include low education level, lack of childcare, lack of sick leave, or inability to miss work, fear of bad news, or pain from the procedure.
- Some more difficult barriers to overcome include cultural and language differences.
- There are barriers to this follow-up — including social and economic inequality, fear of cost or pain and avoidance of possible bad news.
OTHER RELEVANT INFORMATION — BREASTFEEDING HELPS PREVENT BREAST CANCER
- While not specifically linked to diagnoses and treatment, this factor, which increases the likelihood of AA women getting breast cancer, may also be of interest.
- It is estimated that 68% of basal-like breast cancer could be prevented by preventing obesity and increasing breastfeeding.
- A 2017 CDC study showed that while 9% of white women gave birth prematurely, 14% percent of black women also had “preemies”.
- The babies that need to be breastfed the most are those born prematurely. “Black women have babies born too small and too soon.”
- A CDC study shows that from birth to 12 months, black women are significantly less likely to breast feed.
- Black women have different cultural attitudes toward breastfeeding. During slavery, black women were forced to nurse white children instead of their own, and after the Civil War, that power dynamic continued with women of color working as wet nurses. Breastfeeding was not a choice but “something we were forced to do,” said Seals Allers, an African-American woman.
- “They may be more likely to work lower-income jobs, where they don’t have a maternity leave, and they may not have workplace policies that support breastfeeding,” she says.
- Health care workers may also assume that new mothers who are African American are less likely to breastfeed, and so offer them less encouragement postpartum: fewer visits from a lactation consultant, for instance, and more baby bottles and cans of formula.
- Hospital maternity wards that serve larger black populations are less likely to help black women initiate breastfeeding after giving birth or offer lactation support following delivery, according to the CDC study. Often, staff in these facilities instead offer formula to black babies.
- All of these issues together increase the likelihood of breast cancer and help form a life-long estrangement between AA women and the health care system, putting up yet another barrier to diagnosis and treatment.