We are sad to share that Sheila Johnson passed away in April 2024.
Sheila Johnson had never planned to be a fierce advocate for clinical trials, but her life took a dramatic turn when she lost her mother to metastatic breast cancer (MBC) in 2004. Just five years later, she found that she also had MBC when her doctor found the burning sensation she felt was the result of a tumor pressing against the wall of her chest. At the time of her diagnosis, the tumor had already spread to her ribs and liver. Following multiple rounds of chemotherapy, Sheila’s doctor offered her another option.
“There’s a clinical trial that I would like you to try, and it’s supposed to be the next big thing,” her doctor explained. She hesitated at first, but eventually decided to enroll. Today, Sheila has been living with MBC for 13 years and describes her nearly four-year participation in a clinical trial as a life-changing experience. She hopes her story can inspire others to see the benefits of participating in this groundbreaking research.
“This cancer is not about Sheila,” she says. “It never was and never will be. It’s about who I can help and who I can encourage. It’s about who can look at me and say, ‘Well, Sheila tried that clinical trial. Maybe there’s something to clinical trials.’”
Where once there were no answers or only limited choices, clinical trials bring more possibilities to breast cancer patients. And with new options on the horizon to detect, diagnose and treat breast cancer, we have more reason to hope than ever before.
Why Should I Care About Clinical Trials?
Clinical trials are a crucial step that brings discoveries found in the lab to patients in the clinic. Because of recent clinical trial findings, some patients now have new treatment possibilities with antibody-drug conjugates, some may safely skip chemotherapy or sentinel lymph node surgery, or some have the opportunity to safely de-escalate their radiation therapy.
Clinical trials provide some patients with an opportunity to receive a new treatment, approach or technology that might work better than the current standard of care. When you are part of a clinical trial, you have access to these new tools or therapies before they are available to others, as well as additional care and attention from clinical trial staff. At the very least, clinical trial participants receive the current standard of care, but they might receive a new treatment that works even better.
By participating in a clinical trial, you can help not only yourself, but also your community. You are an active member of a supportive network that is helping to move this important science forward. By participating in a clinical trial, you are contributing to advancements that will help improve outcomes for patients in the future.
Spotlight on Clinical Trials
At Susan G. Komen, we want people to be informed and have the best opportunities for high-quality care, and that is why we are launching our new educational series, “Spotlight on Clinical Trials.” Through this series, we will shed light on how clinical trials offer patients promising options to the current standards of care. We will also explain the basics of how clinical trials work, including their distinct phases.
Through the eyes of patients and scientific experts, including researchers and doctors, we will share stories of how clinical trials are changing the landscape of breast cancer detection, diagnosis and treatment. Our stories will highlight the unmet needs for patients that specific clinical trials are seeking to fill, including how Komen is working to improve cultural diversity in these studies to ensure health equity.
Clinical trials are one of the biggest reasons that we have seen improvements in breast cancer outcomes over the past four decades, and with more studies in the pipeline, the future holds much promise. Without the participation of patients like Sheila who are willing to join clinical trials, these scientific advancements would not be possible.
“This is top-notch research; this is research that is going to help us,” Sheila says. “It’s not only helping me, but it’s going to help generations 10-15 years from now.”
Visit our clinical trials page to find a clinical trial and learn more.
