Kendra Outler, MD, MPH
Founder, Uzima Health & Wellness
When I arrive at the historic two-bedroom brick home off Moreland Ave in Atlanta, I knock two times and enter. No one is shocked to see me as I enter the bedroom, I am family now. I kiss Granny and say my hellos and put my purse down. Renita looks up surprised that I had come back so soon. I just crawl in bed next to her. The bed is so hot because she stays cold, I can feel the sweat building on my face, and I think I am either fainting or falling asleep. “Am I getting ready to die? I say, “No girl.” To change the subject, I continue, “You wouldn’t talk to me on the phone and I had something to say so I took a plane to tell you something. “What?” She asked. “I forgot now.” And we both laugh…. I took that picture of us (shared below) so that I could know that I was there for her just as she had been for me.
This month we recognize Breast Cancer and pledge another year that we can lower the number of Black Women who are more than likely to die from this disease. The month of October comes once a year, but this is an everyday fight for patients, families and doctors who treat these incredible women and men.
The reality that my parents did not have the resources for me to go to college was clear within a few short months of moving into the dorms. I was not a first-generation college student, but I was the one who decided to go to a private liberal arts college away from home. One semester, I had no book money, no allowance and at that time you could not set up a go-fund-me page; I called home crying, “get a job” was the answer. Like so many others, I had to struggle through college balancing work and academics.
I remember my graduation day, she came across the lawn with her white cafeteria uniform, stockings and white SAS shoes, eased next to my Mother and said, “WE are so proud of her”.
I caught the attention of the Black women who worked in the cafeteria. They wore the white uniform dresses with the hosiery and the white SAS shoes. Their freshly permed curls had to be tucked underneath hairnets. Yes, I went to a southern predominately white school. These women took an interest in the ten or so black girls on campus. They watched us and studied us and knew our names even if we never told them. Before long, coming back from work and missing the dining hall hours, there would always be a container of food wrapped for me to take back to the dorm. One of the women, whose name was Renita, made the best chicken tetrazine. I loved it, and she knew it.
For four years I struggled through college with Renita looking out for me. I remember my graduation day, she came across the lawn with her white cafeteria uniform, stockings and white SAS shoes, eased next to my Mother and said, “WE are so proud of her”. Then she marched back to her duties in the cafeteria. Fast forward to my medical school graduation, she promised to take her first and only plane ride to watch me walk across that stage. This time she wore a beautiful floral dress and had her hair down. There was nothing constrained anymore, not even my tears when I watched her and her youngest son Brandon board the plane to head back to Atlanta.
It had to be around 2004 that Renita was diagnosed with breast cancer. At that time, I was a practicing physician in New Orleans, and she called for me to speak with her surgeon as all the information was overwhelming. Her surgeon was a caring black surgeon who explained to us that her breast cancer was in her axillae where she had extra mamillary tissue. I saw these “extra breast” before but I never commented on it.
We locked eyes; she was scared. I started sifting through her medication bag and then her stack of labs and reports. There it was in black and white, Renita had triple-negative breast disease.
I flew back and forth for her surgeries and then went over the chemotherapy and radiation treatment plan. Everything was going well until it wasn’t. Renita, called and said, “My arm hurts just like the first time.” After another biopsy, it was confirmed her cancer was back. What kind of breast cancer was this? I had been to conferences on breast cancer. I reassured her, Renita we can beat this. Another flight back to Atlanta to check on her and she looked sick. We locked eyes; she was scared. I started sifting through her medication bag and then her stack of labs and reports. There it was in black and white, Renita had triple-negative breast disease.
Breast cancers are tested for the presence of estrogen and progesterone receptors. A receptor is a protein on the outside of a cell that can attach to specific chemicals, hormones or drugs traveling through the bloodstream. Breast cancers can be hormone receptor (HR) positive or HR negative. Tumors are also checked to see if they are HER-2 negative or positive. Breast cancers that are HER-2 negative and also lack receptors for estrogen and progesterone are referred to as “triple-negative.” This form of the disease tends to be aggressive and may respond better to different treatments. It appears to be more common in young black and Hispanic women. I called Renita’s oncologist and tried to get some understanding of her disease and the treatment he had her on. As we spoke physician to physician, I learned about the challenges of treatment. In 2008, we did not have a specific cure. Of 180,000 women diagnosed yearly, 40,000 women die. Of all breast cancers 15 % are triple receptor negative with premenopausal black women making up the majority of these cases. Her oncologist told me he did not have a cure but hoped to keep the cancer cells from spreading further. She was on an experimental form of chemotherapy that had only been tried in nonhumans. Now, I understood why she could never tell me the names of the drug she was taking. Moving away from her, I heard the words, “She will die of her disease.” Renita was diagnosed in 2004 and she died after a tireless fight in 2008.
Breast cancer strikes women of all racial lines, but Black women still have the highest mortality. We still present at a later stage for diagnosis, receive less aggressive chemotherapy options, and less comprehensive cancer care. Understanding the socioeconomics of health is important to understand that we can improve breast cancer outcomes. It also means that even if there is no cure, we can work to alleviate suffering for these patients and their families.
It is now 2020 and I have another friend who with a heavy sigh revealed that her biopsy came back as triple-negative breast disease. Today, the treatments have names but ultimately this form of breast cancer takes the lives of young black women. Only by my chance friendships with three black women with this form of cancer have I learned more and more about triple-negative breast cancer. I believe that we need more communication and discussion about this disease both within our communities and with the medical communities. Renita had a sister who died of breast cancer. I asked her one night “what kind of cancer did your sister have?” Her response was “we never talked about it.” Today, as I think about her daughter and granddaughters, I wonder if they know that at least one of them is at risk of getting this form of disease.
We have all read stories about beating breast cancer, but for some women it is about living with breast cancer. It is about being thrust into an obstacle course of surgeries, chemotherapy, radiation therapy, malnutrition and infections. They fight fatigue, nausea, headaches, body aches, hair loss and black nails while still being women, mothers, wives and friends. Breast cancer strikes women of all racial lines, but Black women still have the highest mortality. We still present at a later stage for diagnosis, receive less aggressive chemotherapy options, and less comprehensive cancer care. Recognizing the socioeconomics of health is important to understand that we can improve breast cancer outcomes. It also means that even if there is no cure, we can work to alleviate suffering for these patients and their families.
According to the CDC (Center for Disease Control), the social determinants of healthcare can be grouped into five areas:
1) economic stability
2) educational access and quality
3) healthcare access and quality
4) neighborhood (environmental) and
5) social and community context (racism/ violence).
COVID-19 and the prolonged fight against this virus is not only placed a huge burden on our healthcare system, but the impact of the loss of jobs is creating a ripple effect causing food and shelter insecurity. If Renita’s diagnosis was discovered today, she and her husband would be out of jobs because they both work for colleges that are closed and even if she had insurance her access to appointments and care would be limited. Imagine, having to choose between paying for food or paying medical bills. The worry of going through chemotherapy and getting coved 19. This is the nightmare that many women today are living. Renita lived four years after her cancer diagnosis; today will that time be shorter for a woman diagnosed with triple-negative breast cancer. << Is this a question?
According to the Kaiser Family Foundation, there have been great strides to create initiatives to address the social determinants of health inside and outside of the healthcare system. We are focused on the pandemic and policies of how best to protect against the spread of the disease. However, we are losing sight of the fact that the Trump administration continues to aggressively pursue policies that include enforcing and expanding work requirements for public assistance. They want reduction in funding for prevention and public health. All of these policies combined with a complete dismantling of the Affordable Care Act will bring about more loss of life over longer years than the pandemic alone.
Breast cancer is the most commonly diagnosed cancer among black women. Last year there was an estimated number of over thirty thousand new cases with over sixty-five hundred (6,500) black women who died of the disease. For me and others who have to hear our mothers, sisters, lovers, and wives whisper, “ I have breast cancer” during the time of the COVID-19 pandemic, the fight just got harder.