When Karen Peterson was diagnosed with stage 1 triple-negative breast cancer (TNBC) in 2015, she relied mostly on her physicians for information. But when the cancer returned two years later as stage 4, she vowed to do things differently.
She took charge of her treatment plan. She educated herself, read scientific papers, and tracked down the researchers behind the studies at their workplaces, conferences, and fundraising events, each time pleading with security guards to let her through.
“I was just trying to stay alive. Understanding that I didn’t have enough knowledge the first time around fueled me to be different when it came time to save my life,” she said. “It’s what made me look researchers dead in the eye and ask them to break down all the variables that don’t come along with the definitions and descriptions you find online.”
This is how she learned about histologic grades and TNBC subsets, the different immune cells and how they respond to cancer, tumor mutational burden and what it means for treatment, the difference between genetics and genomics, between a phase I and phase III clinical trial.
And it’s how she learned about the clinical trial she credits with saving her life.
“The trial wasn’t even listed on clinicaltrials.gov yet,” she said, explaining that she only learned of it through a conversation with a researcher involved in the study. The researcher also walked her through the trial’s eligibility criteria, which required participants to have received fewer than two lines of prior treatment.
“I had to do everything possible to make sure I stayed eligible for the trial, which meant learning a lot of the nuances [of the eligibility criteria] very quickly,” Peterson said.
“It’s very important for patients to have information,” she said. “Had I had the right information—and understood it—when I was first diagnosed with stage 1 cancer, I may have done things differently. I probably wouldn’t have chosen to have a double mastectomy, knowing what I know now.
“So, I place high value on education; without it, you can’t make informed decisions about your treatment.”
The Black TNBC Sanctuary
Stories like these are what inspires Ricki Fairley, chief executive officer of TOUCH, The Black Breast Cancer Alliance, to do something to help patients find the information they need.
Herself a Black woman, Fairley remembers resorting to “Dr. Google” when she was diagnosed with stage 3 TNBC in 2011. What she found was not very encouraging.
“Every page was like, ‘You’re going to die. You’re going to die. And if you’re Black, you’re going to die fast,’” she recalls.
After a year of surgery, chemotherapy, and radiation, Fairley learned her cancer had progressed to stage 4 and was told to get her affairs in order. She once again looked online for hope, but it took a lot of searching before she came across the Triple Negative Breast Cancer Foundation. She reached out to the group, which recommended a different doctor who was able to help.
“I took a lot more chemo, and I didn’t die,” said Fairley. “It’s been 13 years, and I know God has left me here to help others with this disease.”
Driven to provide patients with the hope she struggled to find, Fairley brought together four organizations to develop the Black TNBC Sanctuary, a new website with information and resources specifically for Black patients with TNBC.
“The Black TNBC Sanctuary is the first and only TNBC resource for the Black community, by the Black community,” said Fairley.
The project was supported by a grant from Gilead and is a collaboration between TOUCH, the Triple Negative Breast Cancer Foundation, Nueva Vida, and the American Association for Cancer Research (AACR), with AACR providing scientific expertise to ensure the accuracy of all medical content.
The website, which launched November 19, features information about TNBC and its diagnosis and treatment—all in easy-to-understand language. Details about TNBC, genetic testing, treatment options, side effects, clinical trials, sexual health, integrative care, fitness, mental health, fertility, and more are provided in multiple formats, with links to additional resources.
On top of providing accurate and accessible medical information, the Black TNBC Sanctuary offers culturally sensitive information and resources on other topics relevant to Black patients, such as recommendations for noncarcinogenic hair care products, tips for managing the treatment side effects that largely affect Black patients, and ways to talk with family about cancer. The site also incorporates videos from Black TNBC survivors to offer support and guidance to patients from those on the other side of cancer treatment.
All content on the website went through multiple rounds of vetting by community focus groups to ensure it would meet the needs of Black patients. To make sure the site serves the Afro-Latina community as well, the Black TNBC Sanctuary is also available in Spanish.
“The Black TNBC Sanctuary is the first and only TNBC resource for the Black community, by the Black community,” said Fairley.
“If this resource had existed when I was going through treatment,” said Peterson, “it would have shown me that there were people who I could relate to, people from my community sharing their stories and providing solace and guidance. I am also glad to hear that the resource was thoroughly reviewed by scientific experts because at the end of the day, you have to mix the comfort up with a very healthy dose of science.”
A Dearth of Information, a Quest for Answers, and the Birth of a Unique Resource
The website is the culmination of years of questioning by Fairley. “Why doesn’t anyone talk about TNBC?” she wondered. “Why are there so few drugs for us? Is it because we’re Black?”
Fairley’s curiosity took her to scientific conferences, where she forged connections with breast cancer researchers, including with Melissa Davis, PhD, whose research has shown that the breast cancers that develop in Black patients may be fundamentally different than those in white patients.
Fairley had already started to refer to TNBC as “Black breast cancer” given its markedly higher incidence in Black women, who are twice as likely as white women to develop TNBC and are more likely to be diagnosed at a later stage. Black women are also about 40% more likely to die of breast cancer than white women, due in part to their greater risk of TNBC, which is the most aggressive and hardest to treat type of breast cancer.
Davis’ research findings further convinced Fairley that Black women face unique challenges when it comes to breast cancer, not only in their care but also in the biology of the cancer they develop.
“This evidence gave her a new perspective on how and why Black women have worse outcomes, even when socioeconomic factors are not a barrier,” noted Davis, who is the chairperson of the AACR Minorities in Cancer Research council and the director of the Institute of Translational Genomic Medicine at Morehouse School of Medicine. “The findings really resonated with her, both as a Black woman and as an advocate for the many young, Black women diagnosed with TNBC.”
Since then, the pair have teamed up on multiple projects, with Davis serving on the scientific advisory boards for some of Fairley’s patient advocacy initiatives, including the Black TNBC Sanctuary.
“The Black TNBC Sanctuary is a living resource that provides sister-to-sister communication about matters relevant to Black patients navigating their cancer diagnosis,” Davis said.
“With any community, what patients are really looking for is hope. They’re looking for information that helps them understand their situation, understand what the treatment options are,” said Davis. “But the information that’s widely available doesn’t necessarily have tailored information about the experiences Black women have and therefore isn’t helping them advocate for themselves.”
“The Black TNBC Sanctuary is a living resource that provides sister-to-sister communication about matters relevant to Black patients navigating their cancer diagnosis,” Davis said.
As an example, she points to the nuances that come with cold capping, a method some patients use to help prevent hair loss from chemotherapy. It requires wearing a tight-fitting hat that cools the scalp during treatment, but for Black women who wear their hair naturally, the caps literally may not fit on their heads, Davis explained. While certain companies can create cold caps for Black women with thick or natural hair, patients are often unaware that this is even an option.
The Black TNBC Sanctuary includes information about cold capping for Black women, among other culturally specific topics.
“You have no idea the impact it has on a patient to know that those types of details were thought about. That sort of positive energy can affect their outlook, and their outlook then impacts their outcome,” Davis noted.
She added that Black patients are less likely to have established relationships with a dedicated primary care provider and are more likely to be treated at community hospitals with fewer resources than academic institutions—two factors that can limit the communication of relevant and up-to-date information patients need to advocate for themselves during treatment and through survivorship.
“This resource will help navigate people to additional information that can help them think about not just the treatment and the drugs, but their wellness as well,” Davis said.
Davis also hopes the resource will help physicians improve their cultural competency so they are better equipped to treat TNBC in Black patients.
“No one is necessarily inherently misguiding anyone, but many clinicians are missing insight into some of the nuances Black patients deal with, like the issues with cold caps,” she said. “I think the Black TNBC Sanctuary could become a resource for clinicians to learn about the concerns of the community.”
‘You Are Not Alone’
The Black TNBC Sanctuary also aims to address the lack of emotional support many Black patients with TNBC face—something both Fairley and Peterson experienced firsthand after their diagnoses.
Both women recall joining support groups for patients with breast cancer, only to be faced with rooms full of older white women whose lives, diagnoses, and treatments they couldn’t relate to.
“They were all talking about the side effects of tamoxifen, a treatment that I wasn’t even eligible for,” Fairley said. (Tamoxifen is used to treat hormone receptor-positive breast cancers and is not an option for patients with TNBC.)
“If this resource had existed when I was going through treatment,” said Peterson, “it would have shown me that there were people who I could relate to, people from my community sharing their stories and providing solace and guidance.”
The lack of representation is apparent in academic literature, too, added Peterson. “This is the reason I share my story,” she said. “Somebody out there is wondering if it’s possible to survive as a Black woman with TNBC, and I need to provide hope by showing them that, yes, it is possible.”
To patients newly diagnosed with TNBC, Peterson offers this advice: “Give yourself grace and space, find your support, and don’t do it alone. You are not alone.”
A Sanctuary of Hope
Fairley envisions the Black TNBC Sanctuary as a haven, a sisterhood, and a community for Black patients and survivors navigating TNBC, a place for them to find strength and learn from one another about all facets of the cancer journey.
In other words, a sanctuary.
“We wanted to make it feel like you’re in your living room, like you’re in a place of peace surrounded by love and women who are struggling with what you’re struggling with—to give you comfort, care, and love.”
Above all, she wants patients to feel hopeful and empowered to fight for the care they deserve. “It’s going to be really hard, and you’ll have to fight, but you’re going to come out of it stronger, better, and more of a badass than when you went in.”
Visit the Black TNBC Sanctuary for information, resources, and support for Black TNBC patients and their caregivers.
