By Alexa Spencer | Word In Black
(WIB) – After receiving a breast cancer diagnosis in 2015, Marissa Thomas, a 42-year-old Atlanta resident and breast cancer awareness advocate, scoured social media to find other Black women who were also navigating the disease.
She was fortunate to discover a few women — who remain her supportive friends to this day — but it wasn’t easy to find them.
When simply searching the hashtag “breast cancer,” she says “nine times out of 10, what’s going to come up are accounts or pictures or images of white women and not necessarily Black or brown women.”
On top of that, “most of the groups that were out there that were online, were, for the most part, all white organizations, which is fine, but we can only relate to them so much,” Thomas tells Word In Black.
Jumping those hurdles led her to co-found For the Breast of Us alongside Jasmine Souers. The online community empowers women of color affected by breast cancer to make the rest of their lives “the best of their lives.”
“I knew that they were out there, and I just wanted to create a community where we could all connect easily in one central location,” Thomas says, who serves as the organization’s CEO.
Breast Cancer Doesn’t Just Affect the Body After a Diagnosis — it Can Affect the Mind, Too
Breast cancer is the most common cancer among women in the United States. An estimated 13% develop the disease at some point in their lives, and about 2.5% die from it, according to the American Cancer Society.
Among Black women, the stakes are even higher. Not only are they more likely than white women to develop breast cancer before age 40, but at any age, when they do get diagnosed, it’s often more advanced and aggressive forms of the disease, such as triple-negative breast cancer (TNBC) and inflammatory breast cancer.
Overall, Black women are 40% more likely than white women to die from breast cancer.
Thomas, who received a stage two diagnosis, was 35-years-old at the time. The news came with an emotional aftershock.
“I, of course, was angry after I was diagnosed, which a lot of people are,” she says. “And within Black and brown communities, especially for women, we’re told that we need to be strong. if you’re sick, that’s like a weakness.”
Additionally, it’s not uncommon for people to experience mental or physical illness after receiving a breast cancer diagnosis. One-in-four experience depression and are more likely to experience one or more of the following conditions: addiction, anxiety, fatigue, insomnia, memory loss, mood swings, or post-traumatic stress disorder.
Post-diagnosis mental illness could be more severe if a person was diagnosed at a younger age, had prior traumatic experiences or mental illness diagnoses, lacked access to higher education, or had a lower income.
Lacking social support from family, friends, or community could also contribute to mental challenges among women living with breast cancer.
That’s where For the Breast of Us steps in.
“I knew how powerful it was to just have an online community and being able to connect with other people who don’t necessarily live close to you, but that you can just connect with, with the experience that you’re going through,” Thomas says.
What it Means to “Survive” After a Breast Cancer Diagnosis
For the Breast of Us, founded in 2019, is all about helping women define what “survivorship” looks and feels like for them after a diagnosis.
“Survivorship doesn’t happen once you’re done with active treatment like chemoradiation,” Thomas says. “Survivorship starts right after the day that you’re diagnosed.”
She says the newfound stage of life is embraced differently by each person.
“Whether that is changing up your eating habits, you’re developing a more healthy lifestyle, or you’re living life to the fullest and embracing all the experiences and not living with any regrets,” says Thomas, who moved cross-country from her hometown near Seattle to Atlanta almost one year ago.
A decade ago, before her diagnosis, she “would’ve never done something like that,” but considers the big leap “one of the best decisions that I’ve ever made.”
Empowering Survivors in the Doctors’ Office, Workplace, and Community
For the Breast of Us doesn’t just empower breast cancer survivors to take the reigns of their new life, it also teaches them to navigate the medical system.
Members of the community are taught “to be more assertive and ask more questions when it comes to their health and their treatment plan.”
“You should be the one, if something is off, to immediately go say something to your doctor. And if they don’t listen to you or don’t want to run the test, then you need to find somebody that should,” Thomas says.
As someone who discovered a lump in her breast, but had it brushed off by her doctor, this mission is personal to Thomas.
Thomas says when her doctor at the time was performing an exam on her breast, they both felt a lump. But she recalls that her doctor said, “oh, no need to worry. You’ve kind of been working out a lot. You probably just strained something. No big deal.”
Two weeks later, things had already gotten worse.
“When I was getting out of the shower and putting lotion on, I felt the lump myself. And at that point it had already doubled in size,” Thomas says.
She believes her doctor may have dismissed the lump because she was mentally checked out due to an upcoming retirement or thought she was “too young to get breast cancer.”
Survivorship doesn’t happen once you’re done with active treatment like chemoradiation. Survivorship starts right after the day that you’re diagnosed.MARISSA THOMAS, CO-FOUNDER OF FOR THE BREAST OF US
“I’m a big advocate for — not even just young women, but people in general — especially people of color to be advocates and drivers of their own health,” Thomas says. “We’re the only ones that can advocate for ourselves.”
Through its online library for survivors, For the Breast of Us seeks to connect survivors to trusted resources, from breast reconstruction options to a dictionary of medical terms.
In addition to her own organization, Thomas says every Black woman who’s navigating breast cancer should know about Cancer and Careers — a nonprofit organization that empowers people living with cancer to thrive in their workplace.
She also recommends Living Beyond Breast Cancer, an organization that partners with For the Breast of Us and provides support through its Breast Cancer Hotline and other resources.
Any woman of color who’s been diagnosed with breast cancer also has an opportunity to join the For the Breast of Us’s Baddie Ambassadors.
The ambassadors “help elevate the stories and the voices of women of color diagnosed with breast cancer” by advocating online and in their local communities. Women from all over the country have joined, and the list — a phonebook-like directory for survivors seeking companionship — keeps on growing.
Most importantly, through the principle of community that the organization was founded on, Baddie Ambassadors connect with other survivors to share resources.
“At the end of the day, just making sure that the information and resources that they receive, that they pass that information onto other women who have been diagnosed as well, so that makes their experience easier for them.”