- Actor Yvonne Orji has joined “Uncovering TNBC,” a campaign that aims to raise awareness of triple-negative breast cancer (TNBC) and the stories of those who’ve survived it.
- Triple-negative breast cancer disproportionately affects Black women, who can experience a more severe course of the disease.
- They can also face institutional roadblocks in access to quality care, timely diagnosis, treatment, and information.
When Emmy nominee Yvonne Orji first met three women sharing their experiences with a rare form of breast cancer, she says she was startled by the irony that they were a bit starstruck.
“It’s so funny. When I went to talk to them, they were looking at me like I’m the star, and I’m listening to their stories, and I’m like, ‘No, you all are the real MVP, this is your life,'” Orji told Healthline.
“I play characters on television, I do make-believe and you all really set into this very hard season of your life, you overcame, and then you had the audacity to make sure other people who come after you who could possibly be experiencing the same thing, had access to things you didn’t even have? Brava, brava, like ‘the award goes to you guys,'” she said.
Orji sat down with Damesha, Sharon, and Tiah, three women opening up about their experiences with triple-negative breast cancer (TNBC), for three short documentary films, each detailing their health journeys with this aggressive form of breast cancer.
The films are part of “Uncovering TNBC,” an awareness campaign from Merck in partnership with breast cancer advocacy organizations like the Triple Negative Breast Cancer Foundation, Tigerlily Foundation, Living Beyond Breast Cancer, and Susan G. Komen.
As the ambassador of the campaign, Orji said it is important to use her platform to spotlight a form of breast cancer that she – and many others – had never heard of before. She also hopes to help fill in necessary public knowledge gaps in the narratives of who exactly is most severely impacted by breast cancer.
Triple-negative breast cancer disproportionately affects Black women, who can experience a more severe course of the disease. They can also face institutional roadblocks in access to quality care, timely diagnosis, treatment, and information.
For Orji, it was essential to direct a clarifying lens on these stark realities and empower Black women, particularly with the affirmation that their stories matter and it’s crucial to stay on top of routine cancer screenings.
“Again, if you’re like me and didn’t even know this was a thing, the campaign lets you know ‘this is a thing’… this is your moment to know this disease exists,” Orji stressed.
She pointed out that the campaign is hoping to make more people aware that TNBC exists as a more aggressive form of breast cancer. It’s also working to empower people to get screenings and schedule regular check-ups with their doctor. If they’re diagnosed with TNBC, it can be caught early, and they’ll have a better understanding of the available treatments.
“So, it’s not kind of like, ‘Ah man, if I only had gone to the doctor 6 months ago.’ No! We’re not here for that,” she said.
A diagnosis of triple-negative breast cancer means you’ve received three negative tests for key proteins, or receptors, that usually assist in the growth of breast cancer cells. This means you’ve tested negative for estrogen and progesterone receptors as well as excess levels of the protein known as HER2.
This indicates that typical treatments you’d receive for other types of breast cancer that have those receptors might not be effective in treating TNBC,
TNBC numbers are about 10 to 15 percent of all people with breast cancer. It’s more common in women under the age of 40, African American women, and those who have the BRCA1 mutation, according to
The statistics for Black women are particularly striking. Non-Hispanic Black women are about two times more likely than non-Hispanic white women to have TNBC, according to the Centers for Disease Control and Prevention (CDC) statistics cited by the campaign.
While Orji said the stories depicted in the short documentaries highlighted in the campaign are indeed “empowering,” it was disheartening for her to see yet another clear reminder of the institutionalized disparities and health inequities Black Americans face in our nation’s healthcare system.
If a Black woman receives a TNBC diagnosis, she is more likely to experience more severe disease, has less access to adequate care and timely diagnosis. For such an aggressive, deadly form of breast cancer that this reality is the status quo is inexcusable, Orji said.
“It’s so empowering to hear their stories, but on the other hand, I’m so over it because it’s like, these shouldn’t even be stories,” she said, adding that access to good quality healthcare should be a right. “You shouldn’t have to wonder if your healthcare professional is going to give you all the information that should happen if you get a diagnosis like this.”
Orji said the women she spoke with for this docuseries affirm a paradigm of “‘Yay Black women! You are strong, you can overcome, all is well,’ but it’s like, why do we have to keep overcoming?
“Why do we have to keep being so brave, being so bold? It’s just like, are we even allowed to be sick and trust that the systems in place will take care of us and bring us back to health?’ No, we can’t. We can’t have no days off. It’s very exhausting, actually,” she added.
Dr. Chirag Shah, breast cancer radiation oncologist at Cleveland Clinic, pointed to
“If symptoms such as a breast mass, mass in the armpit – where lymph nodes are located – skin changes in the breast, nipple discharge are experienced, seek medical attention right away,” said Shah, who is not affiliated with the Merck campaign.
“If breast cancer is subsequently diagnosed and the subtype is found to be TNBC, it’s important for women to ask about how the diagnosis of TNBC impacts treatment and outcomes as well as clinical trials as there are trials specifically designed for women diagnosed with TNBC,” he said.
Karen Eubanks Jackson, founder and CEO of Sisters Network Inc., knows a lot about the importance of not only centering Black narratives when it comes to the national discussion around breast cancer but also offering support networks to those who receive a diagnosis and need to know what comes next.
Jackson is a four-time breast cancer survivor who founded Sisters, an organization that has grown to 3,000 members and 25 affiliate survivor-run chapters around the United States since established in 1994.
“I keep pointing out with triple-negative type of breast cancer that you don’t have time to get the knowledge, to find the right doctor, ask the right questions after. It’s time for action when you get diagnosed with triple-negative,” Jackson told Healthline. “Take it seriously, which means getting early detection tools, which is a mammogram plus an ultrasound.”
Jackson, who is not affiliated with the Merck campaign or Orji’s docuseries, said that breast cancer in the Black community is a crisis. Her organization aims to “‘change the narrative,” which is that one should be afraid of finding out a diagnosis. In other words, don’t put off that needed screening, don’t be squeamish about seeking a doctor’s appointment.
“Finding and looking for it early will save your life,” Jackson said. “I’ve saved my life four times with breast cancer. When you have the knowledge and know what you are looking for and taking action, things happen to save your life. That is our approach.”
Of course, when it comes to being Black in America, the institutional hurdles one has to pass in the nation’s healthcare system can sometimes put those tools out of reach.
Jackson, whose organization has been paying for free mammograms for women across the country since 2006, said Black people often receive a “second class” approach to healthcare. Doctors and medical professionals don’t always listen to their concerns, and access to affordable, life-saving health insurance coverage can be out of reach.
A big part of her organization has been trying to elevate these concerns at the highest levels of American policymaking.
On Oct. 16, Sisters Network hosted a national virtual town hall with speakers, including the Rev. Al Sharpton and Sheila Jackson Lee, representing Texas’ 18th Congressional District.
This year, Jackson Lee introduced the Triple-Negative Breast Cancer Research and Education Act of 2021, legislation aimed to spur more rigorous research and education around TNBC.
Jackson added that the past year and a half of racial reckoning, of Black Lives Matter protests and a nationwide, inward gaze at systemic racism has had some positive impacts of emphasizing that we have to close these societal gaps, especially in addressing conditions like TNBC that hit the Black community especially hard.
“So, now is the time, we know these things exist, and they are important for us all to take heed that it is time to make the changes,” she said. “Timing is everything, and the timing is now to take action on the Black breast cancer crisis. Yes, I see light at the end of the tunnel, our organization has been at the forefront for almost 30 years, and we’ve got to shine the light on in order for it to work.”
Orji said it’s so crucial an awareness campaign exists to direct attention to the fact that “TNBC disproportionately affects women who look like me.”
When it comes to people’s lack of awareness about this specific kind of cancer, she said one analogy she uses is to liken it to the reality of different variants or strains of other conditions – think COVID-19, right now. She said all of this information could certainly be overwhelming, but it’s important to hear.
“Breast cancer affects so many women across the world, and then you are telling me there is a subset that targets, specifically, Women of Color at a disproportionate level, and it’s more aggressive, huh? Let’s spread the word out. Let’s get the resources out there,” she added. “These women who have survived are the biggest advocates who tell you, ‘If we did it, so can you, here are the resources to help you. You, too, can be empowered.’ That’s really important to me.”
If you’re primarily familiar with Orji’s character of Molly on the HBO series “Insecure,” her standup comedy or writing, you might be surprised to learn that she had a separate career outside of Hollywood.
Orji, born in Nigeria and raised in Maryland, said her original goal was to be a doctor. After earning a bachelor’s degree from George Washington University, she earned a master’s in public health from the school’s Milken Institute of Public Health.
“In true Nigerian form, I got my public health degree to stall from getting my medical degree,” Orji joked. “I was originally supposed to be a doctor, and organic chemistry told me ‘maybe not. Maybe no.’ But I knew I enjoy health, I enjoyed people, and I investigated ‘what is a different version of being involved in health, but where I don’t have to use a scalpel for?'”
A self-professed people person, Orji liked that public health allowed her to “really understand communities” and use different skill sets. It’s partially marketing in that you have to devise effective health messaging and part empathetic role in relating to others’ experiences.
“You can’t go in and bulldoze and say, ‘This is what you’re gonna do.’ You can’t have that. So, you have to have compassion, have to have empathy, have to have an understanding of cultures and cultural perceptions and reasons behind different adoptions. For me, it’s a jigsaw puzzle,” Orji explained.
She even worked for 6 months in post-conflict Liberia with Population Services International (PSI), an NGO dedicated to using social marketing campaigns to spread the word about healthy behaviors. Orji said she worked with young people to create a mentorship program and a weekly talk show about HIV/AIDS prevention, safe sex practices, and teen pregnancy.
“They were in the middle of rebuilding their country, so you have to be sensitive to the messaging there, and that’s where I got my feet wet with public health and understanding how to disseminate information,” she said.
In many ways, this current campaign is a natural progression for her: using her platform as a celebrity and applying her public health expertise to get the word out about TNBC. It’s also good news to her mom, a nurse.
“I tell my mom, ‘My degree does not expire,’ it’s still there. It’s never wasted. I still understand everything I studied for. I still get opportunities like this because it gives me the ability to kind of dust off that training and be like, ‘You know what? Here it is!'”
While Orji said there have been various health challenges in her family, breast cancer has not been one of them. That being said, she understands some of what the women she profiles in the films experienced when they observed an unexpected, scary shift in their health.
When she was 17, she found out she had a nonmalignant tumor. It wasn’t cancer, it was benign, but she said it was scary, especially as a senior in high school.
She went to the hospital and was shocked when they said they had to perform surgery. They removed a dollar-size lump from her breast.
“I know what that experience felt like, and I’m grateful that it didn’t lead beyond that. Now, I’m up on my checks. If something feels off or different in my body, I’m trying to figure it out, to see if this is normal,” she said.
The importance of getting preventive screenings done – especially for an aggressive disease like TNBC – is something many people have put off during the pandemic.
“Unfortunately, we have seen patients delay needed screenings during the pandemic, which has been seen in the national data as well,” Shah, of Cleveland Clinic, added. “Early diagnosis of breast cancer is important for all types as patients diagnosed at an earlier stage tend to have better outcomes than those diagnosed at later stages. I think this is also very important for TNBC, given that as compared to other subtypes, TNBC can have worse outcomes.”
Jackson said it’s necessary to make health your top priority. Build a healthcare team of doctors and medical professionals and go in for your routine screenings. If something feels off, don’t hesitate.
She says this applies to men as well. Breast cancer can often be stigmatized among men. She said it’s the word “breasts,” which can often make men uncomfortable culturally with their masculinity.
Jackson said referring to it as “chest cancer” is often a way to help destigmatize breast cancer in men. Regardless of who you are, don’t put off the appointments you need.
In addition to breast cancer screenings, Orji said she encourages people to “get all the tests,” as knowing your health status can help you make better decisions.
“The more you know definitely helps, but should you be one of these women who gets this diagnosis, know that there is support for you, there is hope, and you do have a community of allies,” she said.