How Misconceptions About Breast Cancer Led Me to Advocacy

I’m helping to make the community more inclusive so it represents the true diversity of people living with breast cancer and survivors.

Like many of us in the breast cancer community, I found my own cancer. But in my case, it wasn’t a lump. Instead, the entire top half of my breast had hardened.

I should’ve been more concerned, but I ignored it for a while and convinced myself it’s something that happens as you age. That was in 2018 when I was 41 years old, and eventually, my doctor suggested a mammogram — but I still waited.

Finally, I confessed to a close friend that something was going on. I told her about my breast hardening and how my armpit hurt all the time. I admitted I’d been putting off the mammogram.

She took a hardline approach with me, saying she wouldn’t answer my calls until I got this checked, and it worked. I got my first mammogram in February 2020, and right away, the radiologist called in the doctor. That’s when I knew something was wrong.

I was diagnosed with stage 3 breast cancer, and I immediately thought: I’m never ignoring my health again. It was truly a wake-up call.

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Facing misconceptions

I waited to get a mammogram because of my presumptions about breast cancer. I had misconceptions about who gets this kind of cancer and what it looks like. I assumed there’s always a lump because that’s what you’re supposed to look for during a self-exam.

When I thought about breast cancer, I pictured 60-year-old grandmothers with pink ribbons doing charity walks with their families. I imagined the bald chemotherapy patient. Those are the two images we see most often. We never hear about all the other people who get breast cancer.

I’m a fourth-generation Japanese American in my early 40s who doesn’t subscribe to organized religion. I don’t have children, and I’m decades younger than what most depictions of breast cancer convey.

I didn’t see other Asian women represented in cancer awareness images. I only saw white ladies over the age of 55 asking for prayers and sharing photos of their grandchildren.

Taking control of my health was my responsibility, but it didn’t help that these misconceptions — which are pervasive in breast cancer materials — led me to think breast cancer only affects certain groups of women.

That’s part of the reason why I became an advocate: to help expand the understanding that this disease affects a breadth of people. And making connections is a major part of navigating through treatment.

Finding community

I began treatment in March 2020, at the worst possible time due to the pandemic. I couldn’t get the supplies I needed for recovering from chemo at home. I was freaked out about being in a grocery store while my immune system was compromised. I had to ask friends and family to send me stuff.

I didn’t know what to expect from treatment or how to find help. All the support groups were shut down, so I didn’t know how to find other women going through treatment. I thought, “Why is this so hard?”

Treatment is hard enough, but feeling alone makes it so much worse.

Eventually, I went online to Breastcancer.org — a great organization. I found an awesome group of cancer friends and loved connecting with them, but there was still a lack of diversity, and it took time to build up my community. I spent hours searching Instagram trying to find my people until I came across an Asian woman who’s an ambassador at For the Breast of Us.

What a relief it was to see these ambassadors sharing their stories and connecting in meaningful ways. It was comforting and educational to read their insights when I was in the middle of treatment.

When I finally emerged from the cloud of recovery — after chemo, mastectomy, radiation, and oophorectomy — I realized I finally had the energy to become an ambassador myself and give others the opportunity to see someone who’s like them, someone on the other side of what they’re just starting to navigate.

Becoming an advocate

Before I became an ambassador, I found ways to connect and inform. For instance, I really like old-school hip-hop music, and I’d change song lyrics to make them funny and cancer-related.

I sang about 1,000 songs to my dog, so I thought, “Why not share these and make some people laugh in a way that eases their cancer experience?” I created an Instagram account called Cancersonic (a play on J.J. Fad’s Supersonic), where I post all my fun songs.

On the serious side, what I focus on the most as an ambassador is talking to women of color about cancer, especially about higher occurrence rates and more aggressive cancers.

In the same way that I’ve learned to take control of my own health, I want to help others see that they shouldn’t delay getting screened. But I also want to highlight broader societal issues that we all face, like implicit biases and disparities in health equity.

Takeaway

In the beginning, I felt like I didn’t fit into the breast cancer community. Now, I’m part of making the community more inclusive so it represents the true diversity of breast cancer patients and survivors.

That’s what we need because cancer is a greedy, evil bastard who drops you into hell. To navigate it, you find others who’ve been in the same place and have found their way out. They know where the doors are.

That’s how I see myself as an ambassador and For the Breast of Us. We’re here to make sure those doors are opening for everyone.