Navigating Breast Cancer Beyond the Binary
By Barbie Ferguson
Cindy Bernard
After graduating from Montclair State University in 2020, Cindy Bernard (she/they) was finally fulfilling their life purpose by teaching English at a high school in Newark, New Jersey. In Cindy’s words, “I love working with freshmen because it’s such a cool age. They're transitioning from the eighth grade to high school, and learning some independence. I was at a very high point in my life.”
Everything was going great in Cindy’s life until they found themselves feeling more tired than usual. “I started feeling a strange pain radiating from my back to my arm,” said Cindy. Thinking nothing of it, Cindy shrugged it off and took some Tylenol. But then a few days later they felt a lump in their breast.
They went to the hospital thinking it was just an abscess that could easily be removed. Initially, the doctor thought it was just a cyst, but one of the nurses knew something was wrong. After an ultrasound and biopsy, Cindy was diagnosed with breast cancer at the age of 29. A genetic test revealed they had an inherited genetic mutation called BRCA 2 that increased their risk for breast cancer.
The importance of self-advocacy
As a non-binary person, meaning their gender identity falls outside of the traditional gender binary structure of girl/woman and boy/man, Cindy had to navigate another layer of challenges with their healthcare provider.
From the consistent use of gendered terms of endearment to the assumption, and push, for breast reconstruction after the recommended mastectomy, Cindy was a little “off-put” by interactions with their oncologist.
“Although biologically I’m a female, I don't identify as a female. So there was a barrier there,” Cindy said.” But they stood firm, seeing the mastectomy as an opportunity to embrace their whole identity.
According to the National LGBT Cancer Network, LGBT people often face ignorance and discrimination in healthcare. One study revealed, on average, medical students receive under 5 hours of training on LGBT issues in their medical education. The lack of education and awareness can create barriers between patients and even the most well-meaning providers. Organizations like the National LGBT Cancer Network have developed trainings for healthcare professionals like Welcoming Spaces, and provide guidance to help LGBTQ+ patients advocate for themselves as they navigate healthcare.
Learning to ask for help
Like many young survivors, a cancer diagnosis can change the dynamic of relationships.
“I’m a people person, so I love hanging out with people. But during that time, I felt like I lost a ton of people in my life.” Cindy stated. Many of Cindy’s friends and family didn’t know what to say to them or how to support them when they learned of their diagnosis.
Cindy explained, “During that time when I was on chemo and having all those surgeries, I just stayed home. I slept a lot and snuggled with my dog. And that was my life.”
The simple act of admitting they needed support from their loved ones wasn't so simple for Cindy. It took a year of trying to do everything on their own before they decided to do things differently. "So basically I'm not the type of person to ask for help. I like doing things on my own, but eventually, I just ended up going into a dark place. And I reached out to friends to let them know how I was feeling," Cindy admitted.
Their friends and family stepped up, accompanying them to medical appointments, checking in regularly over the phone, and even flying in from out of state for support. But the process was not straightforward for Cindy. They had to learn how to communicate their needs, something they found challenging due to their outgoing but private nature. "For me to tell them, 'Hey, I would love for you to go to the appointment,' they would have had to say, 'Oh, maybe I can go to one of your appointments.' So I'm still trying to figure it out, but it's a work in progress and it does make a huge difference when it comes to asking for help or accepting the help."
Finding a safe and supportive online community
Despite being proactive about their mental health and attending a support group for depression, Cindy felt a lack of support in navigating life after a breast cancer diagnosis. They sought a community where they could connect with younger individuals going through similar experiences, and that's when they came across Young Survival Coalition online.
Young Survival Coalition (YSC) is a nonprofit organization that strengthens the community, addresses the unique needs, amplifies the voice and improves the quality of life of young adults affected by breast cancer. This organization became a lifeline, connecting them to a new friend they interact with daily.
While Cindy hasn’t attended YSC’s LGBTQIA+ Virtual Hangout yet, they enjoy the monthly All Survivors and Thrivers Virtual Hangout so much, they wish the meetings were more often. "I wish we could have it like every week," said Cindy. "It's amazing how many women join and I'm the type of person that I like to use my experience to help others." Cindy hopes to have the opportunity to put her experience as a group facilitator and mental health first aid to help other members of the YSC community one day.
Your voice matters
Every experience with breast cancer is deeply personal, with its own unique challenges and victories, but regardless it’s important to use your voice to get the care you deserve and the support you need. Your needs matter, and speaking up can make a significant difference in your journey.
Click Here to Get Linked to Resources For:
Breast Surgery Support
Genetic Breast Cancer
LGBTQ+ Support
Provider Trainings
Support Groups and Online Communities
Young Breast Cancer
The More You Know
Genetic Test: According to the American Cancer Society, some people might have inherited gene changes (mutations) that can increase their risk of developing breast cancer, and possibly other types of cancer too. Genetic testing for inherited mutations is a way to detect these mutations in certain genes.
Genetic test results can give important information to help you and your doctor:
Figure out ways to lower your chances of getting breast cancer in the future.
Choose the right treatments if you already have breast cancer.
Genetic tests are usually covered by insurance, but financial assistance options may also be available.
Not everyone needs a genetic test and not every genetic test is the same. So talk to your doctor to see what the best options are for you.
