By Gwen McKinney
The sinister 3-D contraption pinched and compressed my breast between two cold, plastic paddles. Part torture chamber, part lifesaver, this diagnostic mammography would deliver the dreaded message: Ductal Carcinoma In Situ (DCIS).
It was early stage DCIS contained in my right breast and classified as “Stage 0.” Nonetheless, an ant farm of intrepid “precancerous” cells had invaded my body. The extermination required three surgeries, a short-course of radiation and huge doses of self-learning about the disease.
When I marked my first cancer-free-versary (January 2023), I remained on a mission to share with Black women the need for breast cancer vigilance.
The seeds of my journey were planted months before diagnosis when the communications strategist in me was inspired to roll out a campaign entitled Black Breast Cancer Vigilance – 365-24/7.
The call to action: (1) Get your annual mammogram; (2) If there’s a family history or breast abnormalities, don’t wait until the recommended age of 40 for your first screening; and (3) Above all, use your instincts, voice, power to be your own breast advocate in the medical system.
Rewind to October “pink ribbon month” when I reached out to marketing maven Ricki Fairley. Little did I know in the fall of 2021, she would connect to my own lifeline. As a storyteller, I was captivated by the unyielding drive of the founder and CEO of TOUCH Black Breast Cancer Alliance. With her high-energy rhythm and pitch-perfect voice, I was convinced that every Black woman needed to hear from her.
Sometime between the production of our podcast and Facebook Live event, it dawned on me that I – the showrunner and creator – had skipped mammography screenings in 2019 and 2020! How could I call for Black women’s vigilance when I wasn’t practicing what I preached? Fueled by guilt and inspiration, I would confront a battery of tests that placed me in an ever-growing sorority of survivors – or in the parlance of Ricki Fairley – “Breasties.”
Breast cancer, more than any other life-threatening disease, has attracted a massive constituency of patients, survivors and advocates whose unmuffled voices in the public square have swelled the ranks of research, treatments and awareness.
Life expectancy has been extended, ranks of women breast health professionals has grown and survivors’ stories are not shrouded in secrets and shame. But there’s still a gaping hole that, according to Fairley, renders Black breast cancer a different disease.
The first thing you learn as a patient is that all breast cancers are not created equal. With disease stages from 0 to 4, there are a dozen types and subtypes. Black women have the highest risk of breast cancer of any ethnic group: struck younger, diagnosed later, die quicker and suffer the most virulent forms. Black women under 35 experience twice the rate of White women, with 39% higher recurrence and 71% higher risk of death.
Rewind to 2010.
Fairley, then a successful marketing executive, was in the throes of a huge campaign launch. She managed to squeeze in her annual physical, unaware a peanut-sized lump under her left nipple would shift her life’s trajectory.
Always juggling a dozen balls at once, Fairley was forced to slow down to absorb the full dimensions of her diagnosis: Stage 3A Triple Negative Breast Cancer (TNBC). Particularly invasive, TNBC strikes premenopausal Black women at three times the rate of their White counterparts. They suffer a high frequency of metastasis (spreading to other organs) and a low overall survival rate.
For Fairley, the disease had moved to her lymph nodes and eventually her chest. The mother of two daughters was given a two-year prognosis and urged to put her affairs in order.
Last September Fairley marked her 12th Cancer-free-versary. Fairley, who was treated with a regimen of experimental drugs, has become a leading patient advocate in the breast cancer community. She says her work is a “God job.” TOUCH – a collaboration with Black women patients and survivors, caregivers, advocacy organizations, health professionals, policy leaders, researchers, and pharmaceutical companies – is pushing policies, people and institutions to become more responsive to the unique and often unmet needs of Black women.
Fairley says staggering stats and wide disparities won’t change without a concerted effort to use science to understand the physiology of Black women and the uneven playing field in access, education, treatment and research.
Clinical trials are not a silver bullet, but they do provide a pathway to address and eliminate the disparities among Black women. Yet, we represent a mere three percent of the current breast cancer clinical trial participants.
TOUCH, understanding our “earned distrust” in medical research, is an influential partner with public policy and outreach organizations seeking diversity and inclusion in clinical trials.
One of those groups is Black Data Matter (#BDM), an initiative aiming to give Black patients a seat at the table to catalyze change in the medical system that often fails us. Therapies and drugs currently available for breast cancer have not been effectively tested on Black women.
Ours must be a journey of hope and faith; but also, action. Participation in clinical research opens opportunities to benefit from future breast cancer breakthroughs.
Gwen McKinney, is campaign director and creator of Unerased | Black Women Speak and president of McKinney & Associates, the first Black woman-owned communications firm in the nation’s capital dedicated to progressive public policy. Unerased is a unique blend of advocacy, narrative development and content creation shaping the stories and truths of Black women and the causes they embrace.