ACOFP DEI Task Force member Roberteen McCray, DO, discusses the stigma of breast cancer in the Black community and the resulting challenges in treatment and diagnosis, offering suggestions for how to more clearly and effectively communicate accurate information—regardless of race or beliefs.
By Roberteen H. McCray, DO; member, ACOFP Diversity, Equity and Inclusion Task Force
Breast Cancer Awareness Month is here!
The World Health Organization has identified breast cancer as the most common global cancer. So, let’s talk statistics… approximately 1 in 8 women in the United States will develop breast cancer during their lifetime. It was predicted that in this year—2021—there would be 281,550 new cases of invasive breast cancer and 49,290 new cases of non-invasive breast cancer diagnosed. Of the new cases of invasive breast cancer, men represent 2,650.
Breast cancer is more common in African American/Black women than white women under the age of 45. And, in comparison to other ethnic groups, Black women are more likely to die from breast cancer. Depending on the reference, African American/Black women diagnosed with breast cancer have a 35%–40% mortality rate. Asian, Hispanic and Native American women have a lower risk of developing and dying from breast cancer, while women of Ashkenazi Jewish descent have a high rate of BRCA gene mutations and, therefore, are at higher risk of developing breast cancer.
Now that the major numbers are out of the way, let’s talk about breast cancer in the African American/Black community for a moment. For those of you who are not culturally aware, there are three diagnoses that are considered the “worst of the worst’” in the African American/Black community: stroke (cerebrovascular accident), cancer (it doesn’t matter which one) and HIV (also known as “The AIDS”). The focus of this blog is breast cancer, so let’s start with myths and misconceptions.
When I was younger, I often heard older women in my community stating that they refused to get a mammogram because it would give them cancer, while others spoke of juices and herbs that would cure anything and everything. I was also exposed to the myth/misconception that if a Black woman was diagnosed with breast cancer, it was because she has been “sent the illness” or because voodoo/hoodoo has been used on her. I was born and raised in Louisiana and heard these things—and more—that people believed and held as the gospel truth.
These myths/misconceptions are often barriers for clinicians when communicating with patients. Regardless of the data we present to patients, their beliefs and what “Dr. Somebody” and “Dr. They Say” have told them hinders our work and often has a more significant impact on patient decision-making than all of our clinical knowledge combined. Hearing some of the ridiculousness in the office can be so frustrating it makes you want to chew bricks (sorry, I am in my feelings thinking about it).
I am going to share two brief stories with you, one from my “before medicine” years and the other from my residency. The first story is personal. My aunt through marriage died from complications of untreated breast cancer around 2003–04. Yes, untreated breast cancer in 2004 in a patient with health insurance—how is that possible?
Well, I mentioned the three diagnoses members of the African American/Black community don’t want to hear earlier, with cancer being one. My family eventually found out that auntie’s breasts bled for two years before she finally went to the doctor. Yes, two darned years! What the heck? When my mother told my sister and me, we looked at her like she had grown a second head and asked her to repeat the statement. And before I could ask, my mother told us the reason auntie did not go to the doctor was because she was scared that she would be told something was wrong. Well, duh, something was definitely wrong. I had no words. One good thing that came out of it was my mother—who had not had a mammogram because “somebody told her they hurt”—started getting mammograms.
The next story is one that is heartbreaking and occurred during my residency. I was working in an outpatient clinic when a Haitian American female came to the office. She had not been seen in over a year. I don’t speak enough Haitian Creole to be identified as fluent—I understand a lot more than I can speak—so one of the Haitian medical assistants translated for me. I noticed that the patient was very apprehensive. As I reviewed her chart, I saw that she had been diagnosed with a mass in her right breast and had not done any follow up or been seen by hematology/oncology.
I had several questions that the medical assistant translated for me, but I noticed the medical assistant said much more than the questions I had asked. I stopped and asked why she added comments to the questions that I asked the patient. The patient was clearly upset, crying and gesturing toward her right breast. The medical assistant responded that she was the assistant of the attending physician—a Haitian American female—who had seen the patient the prior year. She was there when the attending physician told the patient that she had breast cancer and nothing would be done because she did not have health insurance.
I was floored! All I could think about was the impact of delayed treatment and the number of programs to help women who are uninsured and/or underinsured get treatment. This patient believed that there was no help for her and only came back to the clinic because the mass in her breast was larger and so hard, and the skin on her breast had changed. I then asked the patient why she did not contact another office or seek a second opinion, which the medical assistant translated without extra comments.
The patient’s response? People in the community had told her that she would not be able to get treatment, and, if she did get treatment, it would kill her. She believed that she was on her way to death and was scared because she had no one who would take care of her children when she died. My attending in the clinic that day happened to be Haitian American. He and I had a long discussion about this patient, and he was just as shocked as I was to hear that the patient had been told by an attending the previous year that because she had no health insurance, she would not get treatment and would die. It took time to get the patient to understand that there was help available for her and that treatment options varied from patient to patient before she agreed to go to the cancer center for evaluation.
The second patient is an example of one of many Black/African American women who not only fall through the cracks of the healthcare system, but also add to the myths and misconceptions of health care and treatment. She is also an example of a communication failure in that particular clinic, receiving incorrect/incomplete information without a follow up. Clinicians are placed in difficult positions when evidence-based medicine does not coincide with religious and cultural beliefs, but adding incorrect information to the equation can be overwhelming and, in many cases, detrimental to the patient.
It is no secret that more needs to be done in the African American/Black community to increase awareness of breast cancer and also prevent patients from falling through the cracks. Understanding the impact of ethnic, cultural and religious beliefs of the African American/Black community is key to effective communication between clinician and patient and understanding why a patient may make a decision regarding their health care that may not make sense. As clinicians we must ensure that patients—no matter their race or ethnicity—receive correct information regarding screening, diagnosis and treatment so that the best decision can be made by the care team. The ultimate goal is early detection, diagnosis and treatment with no one suffering or dying from complications.