My journey with cancer has been a long and difficult one, but it ultimately led me to my calling as an advocate for Black people in clinical trials. It all started back in 2015 when I was first diagnosed with stage 1, grade 3 breast cancer. At the time, I made a lot of treatment decisions based purely on emotion rather than being fully informed and understanding the science behind the options. I had a mastectomy, thinking it would lessen my chances of recurrence, but in reality, that was an emotionally-driven choice without a strong scientific basis for my particular case.
Two years later, in 2017, I was diagnosed with stage 4 metastatic triple-negative breast cancer. This time, I vowed that I would not make rash emotional decisions. Instead, I became a detective, obsessively researching my disease and treatment possibilities. I sought out patients who had been through clinical trials to learn about the different trial phases. I cold-called researchers to pick their brains about the latest hypotheses and how their work could apply to my heterogeneous tumor biology.
Firing my medical team
When I finally took all this hard-earned knowledge back to my original medical team, they devalued my voice and refused to give me access to the biomarker testing and other tools I needed to make a truly informed decision about my care. That’s when I made the gut-wrenching decision to fire them and find a new team—one that would respect my self-advocacy.
Making medical history
I ended up being the first triple-negative breast cancer patient in the nation to enroll in an immunotherapy-only clinical trial. The science indicated I had a good chance of responding well due to my abundance of fighter cells (also known as TILS or tumor-infiltrating lymphocytes). And I did respond—by September 2017, just eight weeks in, my lesions had shrunk 72 percent. Subsequently, I made medical history by becoming the only patient diagnosed with triple-negative breast cancer, participating in the clinical trial to achieve a complete response.
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Why Black people need to be more involved in clinical research
My journey opened my eyes to the power of clinical research and biomarker testing, but also to the disparities that exist for Black people in accessing these advancements. Too often, we are diagnosed at later stages and have poorer outcomes due to systemic injustices. I realized that if I could go to such extensive lengths to save my own life, I had to pay that knowledge forward to my community.
Starting my own non-profit
That’s why I started my non-profit organization, Karen’s Club. In partnership with the Mount Sinai Tisch Cancer Institute, we ensure that any Black or Latino person entering their Phase 1 clinical trials program first has a consultation with me. I help them understand the process, build an action plan, and ensure they have the tools to make empowered decisions about potential trials or other treatment paths. My goal isn’t to push everyone into trials but to equip them to advocate for themselves based on their unique situation.
There is still so much work to be done to achieve equity in healthcare and research. Black patients deserve to have voices in their care and access to cutting-edge treatments and discoveries. I may be an outlier, but I exist to blaze trails for others to follow. With education and advocacy, we can shift paradigms and save more lives in communities of color. Looking ahead, I hope to leave a legacy through a book that can serve as a guide for future generations advocating for themselves in the face of life-threatening illness. Because there will always be more people diagnosed, and they deserve every fighting chance just like I had.
