Advocating for Myself in Honor of My Mother

Suzette Simon shares her journey with breast cancer

This article is part of Breast Cancer and Black Women, a destination in our Health Divide series.

Suzette Simon Health Divide

Photo courtesy of Suzette Simon / Designed by Julie Bang / Verywell

Meet the Author

Suzette Simon is the founder of NYLaughs, a New York-based nonprofit that produces free comedy events in public spaces to inspire audiences, enrich the lives of New Yorkers, and connect people through humor. She is also the creator of an awareness campaign called #StrongBlackBoobs, which aims to increase breast health awareness and heighten self-esteem among breast cancer patients of color.

My breast cancer journey began with my mom. Unfortunately, her journey ended after her breast cancer returned, despite getting a unilateral mastectomy. 

Because of what my mom went through, I’ve always been so diligent about getting my mammograms and breast cancer screenings.

So in January 2020, when I was diagnosed with Stage 1B/Stage 2 ER positive HER2 breast cancer, I apologized to my mom. I thought I was taking care of myself, and then it turned out, I had breast cancer.

Springing Into Action

After my diagnosis, I didn’t allow myself to become devastated. I had already gone through so much with my mom’s breast cancer, and I was feeling okay because I knew that I had been on top of my mammograms. My doctors were hopeful about my prognosis and suggested a simple lumpectomy to remove the cancer.

But after my mom’s unilateral mastectomy left her with only one breast and what I suspect was an affected body image, I opted to go for the most aggressive form of treatment: a double mastectomy. I would then plan to get breast reconstruction afterward.

Advocating for Myself

I went to see five different breast surgeons and six plastic surgeons until I found the right people to help me through my breast cancer journey. I feel like I flashed half of New York before I finally found the perfect surgeons!

I got my girl gang together—a necessary support system if you’re fighting cancer, in my opinion—and we went to doctors’ visits together or they listened in via phone. They helped me sort through what each physician was saying and gave me their opinions about which one seemed to gel with me the most.

I got my girl gang together—a necessary support system if you’re fighting cancer, in my opinion—and we went to doctors’ visits together or they listened in via phone.

I spent time on Google to help me get a sense of which questions I should be asking when meeting with all of these doctors. I also recorded every conversation I had on my phone so I could listen back to it later—you always think you’re going to remember what each doctor tells you, but you never actually do. Having my friends’ support, my questions prepared, and a record of each conversation helped me compare medical teams and find the right fit. 

For me, that right fit meant a doctor who had worked with people of color in the past or was a person of color themselves. Also, because this is a person who I’m going to have in my life for years to come, I really wanted to have a good connection with my doctor, just on a more human level. Some of the doctors that I talked to weren’t taking my preferences into consideration, and others seemed really clinical, almost like they cared more about my cancer than me as a person. 

One of the other things that was important to me when trying to find a plastic surgeon was how my boobs were going to look. Some plastic surgeon portfolios that I was looking at seemed scary, almost Tuskegee-looking, and I knew I wouldn’t feel comfortable with those surgeons. Even though it’s a medical procedure, I wanted my new breasts to feel sexy! 

After meeting with so many different people over the course of four months, another woman of color recommended this NYU doctor. She seemed like a great fit, and I liked the plastic surgeon she works with too—I think he makes a nice breast. 

Taking Treatment in Stride

I thought I was getting a decent deal when I was diagnosed with breast cancer—I would get breast reconstruction, and that would be the end of it. I signed up for new boobs, but not for chemotherapy and radiation. 

But when the doctors biopsied my lymph nodes, they found cancer in two of them. Again, after my mom’s experience with metastatic breast cancer, I didn’t want to risk anything. So, I asked for them to throw everything they had at me.

Chemo kind of scared me, just because I’m a bit of a hyper person and I didn’t want to feel tired out or not like myself. I also didn’t want to gain weight. But luckily, I did pretty well on chemo—I didn’t have any major disruptions to my life or schedule. The chemo actually made me more hyper and energetic, and losing my hair made me feel kind of sexy. I had been debating whether I should cut my hair for a while, and chemo made the decision for me. 

For me, chemo was also pretty short. I’d heard horror stories of six-hour-long sessions, but more often than not, mine were finished before my Starbucks order could arrive.

Despite all of my efforts, I still don’t consider myself cancer-free. I wish I had a side effect that turned me into Halle Berry, but I’m still struggling with achiness, drug-induced arthritis, slight lymphedema, I walk with a limp, have lost my big toenails, and don't have eyebrows and lashes. I am here, though.

Encouraging Other Black Women to Advocate for Their Health

Because of what I’ve learned going through my breast cancer journey, I decided to create an advocacy and awareness campaign that I call #StrongBlackBoobs.

For women of color, we often don’t have our healthcare options explained to us, and there are roadblocks that keep us from accessing some health resources, like clinical trials. I don’t think my mom, who didn’t have health insurance, knew what the best possible treatment options for her might have been. I’ve also been part of Facebook groups for breast cancer where young women of color don’t even know that breast reconstruction surgery is an option. 

#StrongBlackBoobs is specifically for women of color, and it’s meant to provide information and hopefully advocate to end health inequalities in breast cancer. When we talk about fighting for systemic change for Black people in America, access to quality health care is a big part of that. 

For women of color, we often don’t have our healthcare options explained to us, and there are roadblocks that keep us from accessing some health resources, like clinical trials.

Black women are more likely to get breast cancer younger and are more likely to get more aggressive forms of breast cancer, like triple-negative breast cancer. I was lucky—my breast cancer was much more manageable. I even had one doctor tell me that I had an old White lady’s cancer, which I thought was so funny—I asked her if that meant my cancer might look great in turquoise! Many women of color, though, don’t have that same experience.

For #StrongBlackBoobs, I’ve been posting videos on TikTok and Instagram to get the word out about health disparities that Black women face. I have had issues with social media, though.

Like many Black creators, I’ve had some of my content shadow-banned, or de-prioritized on the algorithm, and other photos that show a side view of my mastectomy have been blocked on the app, even though I’ve seen others post similar videos and pictures. I’ve even contacted the ACLU and Human Rights Commission about the issue—I’m trying so hard to get the word out there about Black women and breast cancer, and it can be hard to see all these setbacks.

But I’m going to continue working on #StrongBlackBoobs. The whole campaign is motivated by a love for my mother and for Black women everywhere. The name is meant to be kind of silly, but I hope it gets the conversation going and takes some of the fear and confusion out of breast cancer—we don’t like to talk about cancer, but we all like to laugh. My approach may be a bit unorthodox, but I’m hoping people will be open to advocacy that’s a bit outside of the norm.

Last year, I also participated in the Breast Cancer Research Foundation’s “Research Is the Reason” campaign to share my story and explain why cancer research is so important, especially for Black women who are underrepresented in clinical trials. I don’t want breast cancer to be a silent killer for women of color, and that’s why it’s so important that we advocate for and support each other.