What I Wish I Knew About Breast Cancer’s Effect on Black Women

Fifteen years before my triple-negative breast cancer diagnosis, I had an abnormal mammogram. The doctor and radiologist reported that the spots were just calcium deposits, which I had surgery to remove. The health team sent me on my way—they didn’t tell me that those calcium deposits could indicate a risk of breast cancer.

In 2011, my doctor found a peanut-sized lump under my nipple during my annual exam. I was quickly diagnosed with triple-negative breast cancer (TNBC). TNBC is an incredibly aggressive and difficult-to-treat breast cancer subtype with a higher mortality rate, fewer treatment options, and higher chance of recurrence than other types of breast cancer. My doctor had only seen two patients with TNBC before me, and both of them died in less than nine months. 

But we followed the standard of care—the treatment regimen that most healthcare providers and experts widely agree is the most effective and appropriate for specific types and stages of breast cancer. At the time, the standard of care for TNBC was a double mastectomy, six rounds of chemotherapy, six weeks of radiation, and breast reconstruction. At the end of those treatments, I was told there were no more signs of cancer. 

Almost exactly a year to the date of my initial diagnosis, a PET scan showed the breast cancer had come back on my chest wall. My doctor told me that my cancer was now metastatic and, at best, I had two years to live. She believed that I was out of treatment options because of her own limited clinical experience with TNBC.

I didn’t want to die—I was the breadwinner for my family and the rainmaker for my company, and I needed to take care of my two daughters. I did my own research and found the Triple Negative Breast Cancer Foundation, a nonprofit organization that recommended a top-notch TNBC oncologist. That doctor put me on two experimental drugs that have since become standard of care for TNBC treatment. Today, I’m an 11-year breast cancer survivor with no evidence of disease. 

The statistics my first doctor and many other doctors use when they talk and think about breast cancer simply aren’t accurate for Black women. We don’t know what we’re up against. 

I knew God left me here for a reason. So in 2020, I co-founded TOUCH, The Black Breast Cancer Alliance with the mission to eradicate what we call Black Breast Cancer. We define Black Breast Cancer as the constellation of exposures, experiences, and lack of science for Black women diagnosed with breast cancer that causes Black women to face disproportionately worse breast cancer outcomes:

• Black women are 41% more likely to die of breast cancer. 
• Black women under 45 are more likely to develop breast cancer than white women under 45. And Black women younger than 50 are twice as likely to die from breast cancer than white women that age.
• For every stage and type of breast cancer, Black women have the lowest five-year survival rate across all racial or ethnic groups.
• Black women have two times higher odds of being diagnosed with TNBC. Black women are also twice as likely to develop inflammatory breast cancer, another aggressive type of breast cancer. 

The list goes on. 

If I had known that Black Breast Cancer was a different ballgame, I would have made different decisions when I had breast cancer. For instance, while my gut told me to opt for a mastectomy, I didn’t know at the time that Black breast cancer survivors have a higher risk of recurrence than white women. I wish I had asked my first doctor how my treatment plan accounted for the significantly heightened risk of recurrence I faced. 

I also didn’t understand that the initial standard of care I received likely wasn’t the best science for my body. Breast cancer clinical trials determine the standard of care for breast cancer treatment, and there just aren’t enough Black people in those trials. If we aren’t in the trials, our bodies aren’t being considered in the results either. A drug that works well for an older white woman may not work the same for a young Black woman. 

The truth is, we can’t know without more data. Currently, breast cancer standard of care doesn’t take into consideration enough the unique biology of Black women. In fact, of the nine breast cancer drugs that were studied for U.S. Food and Drug Administration approval between 2014 and 2018, less than 7% of all participants were Black. To test how drugs work on Black bodies and keep us from dying at higher rates, we need more Black women in clinical trials.

I wish I had known that as a Black woman diagnosed with breast cancer, I would have to fight harder. But I also wish I had known that I wouldn’t have to do it alone. The “breastie” club isn’t one that you want to be in, but once you’re here, we share unconditional love and trust. And TOUCH has a big, incredible community of Black breasties across the country who understand what the fight is like. We’re here both to support and to work tirelessly to eradicate this horrible disease.