In late January 2013, while playing with my young son, I noticed my left breast seemed slightly larger than my right breast. Although, at the time, I had no idea this type of swelling is a hallmark of inflammatory breast cancer, a rare and aggressive disease, I immediately made an appointment with my primary care physician for a clinical breast exam. Although the doctor did not feel any lumps in my breast, he agreed there was noticeable swelling, as well as a thickening of the skin, and my breast felt warm to the touch.
Thinking the problem could be mastitis, he prescribed a course of antibiotics and also suggested I have a mammogram. I knew the importance of having regular mammogram screenings to detect any early signs of cancer and was relieved when the radiologist told me he could find no suspicious masses in my breasts. However, my sense of relief was short-lived.
Just 2 weeks later, the swelling in my left breast became so severe that I couldn’t button my shirt. That’s when fear started to set in. I made an appointment with a breast surgeon my primary care physician had recommended; even before she examined me, she said: “Just looking at the information on your chart and seeing you in person, I suspect you may have inflammatory breast cancer.” I had never heard of this disease and became increasingly frightened.
Winning the Breast Cancer Survivor Jackpot
The next few days were a blur, as I underwent two skin biopsies to confirm the diagnosis. Thisestablished I did, in fact, have inflammatory breast cancer. Fortunately, additional testing, including a series of imaging and bone scans, could find no signs the cancer had metastasized. The cancer was confined to my left breast, and I was diagnosed with stage III cancer. I was just 38 years old and wondered if I would live long enough to see my young children grow into adulthood.
“I’m now using my voice to help other Black women become empowered to advocate for their own best cancer care and to take back a semblance of control.”— KATRECE NOLEN
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I began receiving chemotherapy, followed by a modified radical mastectomy and several rounds of radiation. I’m thrilled to say that after 12 years, I remain cancer-free. I feel like I’ve won the breast cancer survivor jackpot.
Empowering Other Black Women With Cancer
As a Black woman, I found my experience navigating my way through this cancer journey to be especially daunting. I frequently felt dismissed by health-care providers when I tried to get office appointments and treatments scheduled quickly. I’m now using my voice to help other Black women become empowered to advocate for their own best cancer care and to take back a semblance of control.
Inflammatory breast cancer is an insidious disease, particularly for Black women, who have a 70% increased risk of developing the cancer compared with White women,1 and worse survival at 5 years after diagnosis, 29.9% vs 42.5%, respectively.2 We have to change these statistics.
Raising awareness about the differences between inflammatory breast cancer and other types of breast cancer among both the general population and medical professionals will help. We need to do a better job of educating women, primary care physicians, and nurse practitioners about the signs and symptoms of this cancer, so precious time isn’t wasted on misdiagnosis and useless prescriptions for antibiotics and referrals for mammogram testing. This disease is very aggressive, and every minute lost may prove deadly for patients.
Living My Best Life After Cancer
I know how fortunate I am to have survived this cancer. Since my diagnosis, I’ve changed my outlook on life and don’t let situations I can’t control bother me. I live more in the present and am grateful for every day. I’m hoping through my patient advocacy that more Black women diagnosed with inflammatory breast cancer will become long-term survivors, and, like me, they will live their best lives after cancer.
REFERENCES
1. Demsky I: Women with inflammatory breast cancer are living longer, but the gap between White and Black patients persists. Michigan Medicine, University of Michigan, October 12, 2020. Available at https://www.michiganmedicine.org/health-lab/women-inflammatory-breast-cancer-are-living-longer-gap-between-white-and-black-patients. Accessed April 1, 2025.
2. Miller JA: Addressing disparities in the diagnosis and care of rare breast cancer. Dana-Farber Cancer Institute, March 2, 2022. Available at https://www.dana-farber.org/newsroom/features/addressing-disparities-in-the-diagnosis-and-care-of-a-rare-breast-cancer. Accessed April 1, 2025.
Ms. Nolen, 50, lives in Ashburn, Virginia. She is the author of I’ve Been Diagnosed, Now What? Courageously Fighting Cancer in the Face of Fear, Uncertainty and Doubt (NMG Publishing, 2020).
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.
