When Latoya Bolds-Johnson, a then 37-year-old physician assistant and mother of three, was diagnosed with an aggressive form of breast cancer, she knew she needed to be her own best advocate.
Despite initially facing an oncologist who seemed disengaged about clinical trials, Latoya took it upon herself to research and find a groundbreaking trial she could join. Her persistence paid off – she is now thriving as a participant in a cutting-edge clinical trial using advanced therapies targeted to her cancer type.
However, Latoya’s motivation goes beyond just accessing the latest treatments for herself. As a Black woman, she is passionate about increasing the representation of Black patients in clinical trials so that the benefits of research can extend to helping others who share her race and background. Latoya’s inspiring story highlights the importance of self-advocacy as well as the critical need for diversity in clinical trials. Read on for Latoya’s complete story.
Latoya’s Triple Negative Breast Cancer Clinical Trial Experience
My name is Latoya Bolds-Johnson. I am a physician assistant. I specialize in emergency medicine and have been practicing in this field for about 10 years. I am now 37 years old, a proud wife and mother of three daughters, ages two, five, and seven.
On July 26, 2021, I was diagnosed with stage 3 triple-negative breast cancer, subtype invasive ductal carcinoma. My initial treatment consisted of 16 weeks of neoadjuvant chemotherapy with ACT, followed by a bilateral mastectomy in March of this year [the video was film], during which 26 lymph nodes were removed. After that, I underwent 25 rounds of daily radiation treatment for 5 weeks.
I am now in a clinical trial involving residual triple-negative breast cancer after surgery. The trial utilizes ctDNA, which is a circulating tumor DNA blood test. Depending on whether your ctDNA is positive or negative, you get assigned to different arms of the trial. Thankfully, my ctDNA was negative, meaning the blood test showed no cancerous cells in my bloodstream following chemo, surgery, and radiation.
Currently, I am receiving daily oral chemotherapy and immunotherapy infusions through my port every 3 weeks. I am closely monitored by the nurses and the principal investigator of the clinical trial.
‘I had to look for trials for myself’
Initially, my first oncologist did not actively search for clinical trials for me. I had to look for them myself and let him know if I found any I qualified for. However, I later discovered he had withheld a groundbreaking form of immunotherapy for triple-negative breast cancer from me without a sustainable reason.
I then found a second oncologist who genuinely cared about me. She looked into clinical trials from our first appointment, though we didn’t find any suitable ones at that time. A couple of weeks later, I continued searching and found this local clinical trial. With her assistance, I was able to enroll.
Black patients depend on us
Had I not advocated for myself and actively searched for the clinical trial on my own, I don’t believe I would be in one today. This was possible for me due to my medical background and understanding of the life-saving importance of clinical trials.
For me, participating in this trial is not just about receiving the latest medication. As a Black woman, I want to contribute my biological profile to clinical research to help other Black women, my daughters, family members, and the community. More Black participants are crucial so the research can benefit those who look like us and depend on us.
