Ericka Hart was just 13 years old when her mother died of breast cancer.
“It was hard to go through as a kid. My mom was diagnosed with breast cancer in her early 30s.”
While she understood the disease her mother had, Hart learned at a young age that the image of breast cancer didn’t include women who looked like her mom.
“At that time, when I’d tell people that my mom had breast cancer, they’d say ‘no way’ because they thought breast cancer looked a particular way. They thought it looked like being bald, thin, and frail, but even with short hair my mom looked good, and despite being sick, she still worked full time,” Hart says.
The fact that her mom was a black woman also challenged perceptions. Hart points to a long history of black people getting substandard attention within the medical system and wonders if her mother got the best care back in the 80s and 90s.
Fortunately, though, Hart’s mom taught her early on how to care for herself and her breasts.
“She showed me how to do self-breast exams and told me to do them in the shower. I started when I was about 13 years old,” recalls Hart.
Fifteen years after she began self-exams, Hart found a lump in her breast.
“I felt something strange,” Hart says. “I was engaged at the time, and a few months before I felt it myself, my partner felt it during a sexual interaction.”
Hart identified as bisexual in high school, and by the time she was in college, she referred to herself as queer.
She explains that often “in same-gender relationships, that’s how breast cancer is found — through touch. It wasn’t until I felt it [after my partner did] that I decided to get it checked out.”
Hart made an appointment with a breast specialist in the Bronx, New York, who happened to also be her friend. After getting mammograms, ultrasounds, and biopsies, she was diagnosed with bilateral breast cancer in May 2014 at 28 years old. She was HER2-positive Stage 0 in one breast and triple-negative Stage 2 in the other.
“My original question was if I’d lose my hair and if I’d have to go through chemo,” Hart says. “I remember my mom had a hard time losing her hair. As black, feminine people, we are very much attached to our hair and there is a lot of cultural significance around hair. I had more of an attachment to my hair than breasts.”
Hart’s doctor recommended a double mastectomy in 2014, followed by about a year of chemotherapy. She did both.
While she didn’t hesitate with the surgery because she believed it was her best chance at survival, she says it wasn’t until after surgery that she realized she’d never be able to breastfeed.
“I never connected with my breasts as things that made me feminine or who I am or how I attract partners. They were just there and looked nice in shirts. I liked that my nipples felt good, but overall losing my breasts wasn’t a hard loss for me in a lot of ways,” Hart shares. “I’m someone who wants to have babies, though, and after losing my breasts, I had to mourn the fact that I’d never be able to breastfeed.”
She was also concerned about the way reconstruction surgery with breast implants would turn out.
“My mom had a lumpectomy, not mastectomy, so I never saw a black person with a double mastectomy,” Hart says. “Since I wouldn’t have nipples anymore, I wondered if the scars would be under my breast or over them.”
Hart asked her plastic surgeon if she could show her a photo of what the scars would like on a black person. It took the surgeon two weeks to find an image. This hit home for Hart and gave her the drive to advocate.
“The image of breast cancer is a white woman who is middle class, has three children, drives a minivan, and lives in the suburbs. That is what any commercial in October [Breast Cancer Awareness month] will look like,” she says.
“It’s disheartening because what happens is that black people die from breast cancer at higher rates than white people.” Part of the conflict, Hart feels, is “not seeing myself in an advocacy effort.”
As a young, black, queer survivor, she decided to take matters into her own hands in 2016 at Afropunk Fest, a music festival she had been to many times, including when she was undergoing chemotherapy.
This particular time, Hart felt moved to take off her top and bare her scars.
“When I saw a man walk by with his shirt off, I thought I would too,” she says. “I decided to go topless to raise awareness and to contest this idea that people with feminine bodies can’t walk around without shirts on when it’s hot outside. Why is it that we cover up with our shirts and wear a bra when we are hot, but a man can be without a shirt and that’s normal? Everybody has breast tissue.”
She also hoped that exposing her scars would help black, queer people know that they can get breast cancer.
“Our bodies and lives matter and we should be centered in advocacy efforts. We’ve had a long history of being forgotten, and I think it’s time for us to be taken care of,” Hart says.
The action at Afropunk was profound, but it was also true to Hart’s inner activist. At the time, she had 10 years under her belt as a sexuality educator. Before that, she served in the Peace Corps as an HIV/AIDs volunteer in Ethiopia.
“I’ve taught for a while, and I feel like [showing my scars] is kind of like teaching but using your body instead of your mouth. I’m the most present when I teach, so I felt very present and in my body more than I ever had,” she says. “I was also aware of others around me too. I did feel a little worried people would come up to me and I’d get bullied. But it was so beautiful. People would just ask me what happened and that was disheartening because that shows that we don’t know what breast cancer looks like.”
“I’ve always felt if no one else is going to stand up and say something, then I am it. You can’t wait for someone else to say it or take pictures of the person with breast cancer. You are it. You’ve got to put yourself there,” says Hart.
Her latest endeavor is partnering with Healthline to represent its free Breast Cancer app, which connects breast cancer survivors based on their stage of cancer, treatment, and lifestyle interests. Users can browse member profiles and request to match with any member within the community. They can also join a group discussion held daily, led by a Breast Cancer Healthline guide. Discussion topics include treatment, lifestyle, career, relationships, processing a new diagnosis, and living with stage 4.
Additionally, the app provides lifestyle and news content reviewed by Healthline medical professionals that includes information on diagnosis, surgery, clinical trials, and the latest breast cancer research, as well as self-care and mental health information and personal stories from survivors.
“When the opportunity with the app came up, I thought it was great,” Hart says. “Most advocacy around breast cancer looks one particular way, and Healthline wasn’t interested in that. They were interested in hearing my experience as a black, queer person and incorporating that into a situation that oftentimes we’re not factored [into],” she says.
Breast Cancer Healthline (BCH) offers a safe space for anyone going through breast cancer and gives members 35 ways to identify their gender. The app fosters a community focused on matching members beyond just their condition. Individuals are matched on other things they’re interested in, from fertility and religion, to LGBTQIA rights and work-life balance. Members can meet new people every day and match with new friends to share experiences.
Perhaps most importantly, BCH offers instant support through its engaged community, including six groups where members can interact, ask questions, and find help.
“I want people to know that your identity will not protect you from breast cancer,” says Hart. “I hope [people who use the app] will…get more information about their illness and the options that they have so they can bring it back to their doctor and advocate for themselves, which, a lot of times, breast cancer patients have to do, especially people of color.”
Cathy Cassata is a freelance writer who specializes in stories around health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.