Lyndsay Levingston, Founder of SurviveHer Photo: Quinton Boughton of Stones Media Photography.

Lyndsay Levingston never thought that being a breast cancer survivor would be a part of her life story.

The Houston native and founder of the breast cancer awareness and wellness platform SurviveHER, lived a healthy lifestyle and enjoyed the fruits of her labor as an accomplished broadcast media professional in New York City, but in July 2019, the life that she once knew completely changed forever.

She noticed a lump under her breast during a self-exam. What she thought was a cyst, resulted in the diagnosis of Stage 2B triple-negative breast cancer.

“I knew it wasn’t normal. I’d never felt anything like that in my breast. I immediately scheduled a well-woman exam and it was during that exam that I had my very first 3D mammogram and breast ultrasound, Levingston said. “And the biopsy confirmed, the mass that I felt was cancerous.”

Triple-negative breast cancer is an aggressive subtype of invasive breast cancer that is found more common in women under 40 and disproportionately impacts Black women and contributes to racial disparities in breast cancer mortality. This type of disease grows quickly and has the worse survival outcome of all breast cancers.

Why are Black women more prone to Breast cancer than other races?

The reasons why disparities persist among Black women are complex and multifactorial. Structural racism and social economic factors. Less access to high-quality and timely cancer prevention, early detection and treatment are other factors due to inadequate health insurance coverage. Continued research also shows that biology plays a role as well as Black women are disproportionately affected by aggressive subtypes, such as triple-negative breast cancer. Breast cancer deaths have dropped 43% from 1989-2020, according to a report from the American Cancer Society, but there is still a serious gap in Black women’s outcomes that remains the same.  

Percentage of U.S. women with breast cancer who have a BRCA1 or BRCA2 inherited gene mutation, by ethnic group (in alphabetical order)

Ethnicity/RaceBRCA1BRCA2
Black and African American1%2-3%
Ashkenazi Jewish8-10%N/A
Asian AmericanLess than 1%N/A
White (non-Ashkenazi Jewish)2-3%2%
Hispanic4%N/A
Source: National Cancer Institute

According to a study published by JAMA Oncology, Black women who are diagnosed with Triple-negative breast cancer are 28% more likely to die from it than white women.

“It’s a subtype that doesn’t respond well to hormone therapy and it can be difficult to treat, said Dr. Toma Omofoye, the Associate Professor in the Department of Breast Imagining at The University of Texas MD Anderson Center. “If you add the fact that Black women are often diagnosed more commonly at younger ages, it means that they’re often diagnosed prior to them being screened which means that cancer has more time to grow before they are detected.”

Levingston was 37 years old at the time of diagnosis. She left New York City for Houston to begin treatment. She met with a fertility specialist for egg preservation and then prepared for her initial treatment which included chemotherapy, radiation, and a lumpectomy. In between her a few rounds of chemotherapy, she received news that would change the trajectory of her treatment plan.

“[I] received a call from a cousin on my dad’s side of the family alerting me to the fact that cancer runs rampant on my paternal side of the family and suggested I take a genetic test, she said. “That’s what I did through Invitae (genetic testing). The genetic test confirmed that I carry the BRCA one gene mutation. That means that I’m predisposed and at a higher risk for breast and ovarian cancers.”

Knowing about genes and family history allows researchers and doctors to guide women in making informed decisions to manage their risk of developing breast cancer. After 16 rounds of chemotherapy, Levingston made the decision to undergo a bilateral mastectomy, breast reconstruction surgery, and removal of both her ovaries.

“They removed my fallopian tubes to reduce my risk of ovarian cancer because chemo damaged my ovaries. I’m so glad I got some of my eggs out, said Levingston. “They weren’t of use to me anymore and instead of waiting until 40, which was recommended, I wanted to reduce my risk even sooner.”

February 14, 2020, she was declared cancer free and credits genetic testing for saving her life.

Omofoye said there are several factors that contribute to the barriers to early diagnosis among Black women. One of them is the lack of knowledge and study of genetic testing and inequitable research on Black women in clinical trials.

“We know the Black community has a lot of mistrust in the healthcare system. We need more Black people to participate and enroll in clinical trials to gain access to some of the most state-of-the-art treatment options,” Omofoye said. “If we have more Black women participating in these trials, we can get a better understanding of genetic testing rates in Black and white women.”

Instead of dwelling on the negative experiences of her journey, Levingston decided to take her passion for storytelling to empower, inform, and inspire communities of color about breast cancer well beyond the month of October with the launch of her non-profit SurviveHER. She hosts local events with other local organizations and fundraisers to support women who are underserved and uninsured.

“I didn’t know anyone who looked like me when I was going through it or was vocal about breast cancer, so I’m going to be that voice for the people.

Visit imasurviveher.org for more information on her work and upcoming events.

Laura Onyeneho

I cover Houston's education system as it relates to the Black community for the Defender as a Report for America corps member. I'm a multimedia journalist and have reported on social, cultural, lifestyle,...