Until I was diagnosed with HER2-positive, estrogen receptor–positive/progesterone receptor–positive de novo metastatic breast cancer in 2009, I didn’t realize that Black women could get the disease. Although my mother died of metastatic breast cancer 5 years earlier when she was 65, she was the only Black woman I knew diagnosed with the cancer. In 2009, all the television and print advertising campaigns I saw touting treatments for breast cancer featured older White women, so it never occurred to me that I was at risk for the disease, especially at age 43.
Now, knowing how devastating breast cancer—the most common cancer diagnosed in Black women and the second most common cause of death after lung cancer1—is in the Black community, I’ve dedicated my life to educating Black women about this cancer and to ending health disparities in underserved communities, so we can all have an equal chance at surviving this disease.
My journey with breast cancer began while I was serving in the United States Air Force. I was sitting at my desk when I sneezed and felt a burning sensation in my chest. The pain was so unnerving, I made an appointment with the military doctor for a checkup. After talking about my medical and family histories, the physician performed a breast exam and ordered a mammogram.
I knew when she came into the exam room with the results and told me to sit down that something was wrong. The test showed a mass in my right breast. I was sent for a breast ultrasound and an upper body magnetic resonance imaging scan, which later confirmed the cancer had metastasized to my liver and ribs.
“See all those white areas in your breast,” asked the radiologist, as he showed me the imaging results. “That’s cancer. Every time you sneeze, the burning sensation you feel is caused by the cancer pushing up against your ribs.”
Living With Incurable Cancer
I then met with a breast surgeon who said that, because the cancer had already spread to other organs, she did not recommend a mastectomy and referred me to an oncologist. (I did eventually have surgery to remove my right breast and reduction surgery in my left breast.) At this point, I was frightened and still so naive about cancer; I did not know an oncologist is a physician who treats cancer.
At first, I didn’t understand that having metastatic breast cancer meant the disease is incurable and would always be with me. I thought you develop cancer, have treatment, and you’re cured. It’s been a difficult learning process, but I now understand I have a life-threatening disease that needs constant vigilance and that staying proactive in my cancer care is important.
“I’ve dedicated my life to educating Black women about breast cancer and to ending health disparities in underserved communities.”— Sheila McGlown
Tweet this quote
Over the past decade, I’ve been on a series of combination chemotherapy regimens, which included docetaxel plus trastuzumab and paclitaxel plus trastuzumab, among others. They were effective in stabilizing the cancer for long periods but always, eventually, resulted in cancer progression. In 2018, I enrolled in a clinical trial investigating fam-trastuzumab deruxtecan-nxki, an anti-HER2 antibody-drug conjugate for HER2-positive breast cancer, and the cancer is once again stable.
Overcoming Disparities in Cancer Outcomes
I have a 31-year-old daughter. I know her family history and race put her at an increased risk for developing this terrible disease. I don’t want her—or anyone else’s daughter, mother, or sister—to have to deal with breast cancer. One main focus of my advocacy work is devoted to raising awareness about the importance of breast cancer screenings and early detection; educating women—and men—about the risk factors and symptoms of the disease; and providing support for survivors, especially those in underserved communities.
Although advances in more effective treatment for advanced breast cancer are resulting in longer, higher quality lives for some survivors, long-term survival is still unacceptably low for most patients with metastatic disease, with just 28% of women—and 22% of men—surviving longer than 5 years.2 Although more White women than Black women are diagnosed with breast cancer, Black women are 40% more likely to die of the disease and twice as likely to die if they are older than 50.3 I don’t want to be among those statistics.
Despite the billions of dollars spent on breast cancer research, relatively little goes to the study of why many people with nonmetastatic disease at diagnosis, especially Black women, later develop advanced breast cancer and how to halt the disease once it has spread. We need to better understand why racial disparities exist in the development of distant metastases and why Black women face worse outcomes.
My concern is not just for people in Black communities, but for all minority groups experiencing inequities in cancer care. We need increased representation of all minority patients in cancer clinical trials to inform real-world treatment efficacy in Black, Hispanic, Asian, Native American, and Alaska Native patients, so more of us can have an equal chance of survival.
Finding a New Life Mission
I have always led a life in service to others: first as a member of the United States Air Force for 25 years and now as an advocate for those with metastatic breast cancer. My new life mission is to help improve the quality of life for survivors living with advanced disease and to see our hope for a cure come true.
Cancer is trying to steal my body, but I will not allow it to steal my joy.
1. American Cancer Society: Cancer Facts & Figures for African Americans 2019–2021. Available at www.cancer.org/-content/dam/cancer-org/research/-cancer-facts-and-statistics/cancer-facts-and-figures-for--african-americans/cancer-facts-and-figures-for--african-americans-2019-2021.pdf. Accessed on August 23, 2021.
2. Cancer.Net: Breast Cancer—Metastatic: Statistics. Available at www.cancer.net/cancer-types/breast-cancer-metastatic/statistics. Accessed on August 23, 2021.
3. American Cancer Society: Cancer Disparities in the Black Community. Available www.cancer.org/about-us/what-we-do/health-equity/cancer-disparities-in-the-black-community.html. Accessed on August 23, 2021.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
Ms. McGlown lives in Swansea, Illinois. She is a retired Junior Master Sergeant in the United States Air Force and the recipient of Living Beyond Breast Cancer’s 2017 Hear My Voice Award in recognition of her advocacy work in metastatic breast cancer. Her advocacy efforts have also been featured in O, The Oprah Magazine.