About Sheila Marie Johnson
Why Clinical Trials are Important to the Black Community
Statistics show 5/6% of black women participate in clinical trials. We need to continually address why black women aren't asked, told about by their doctors or recruited by researchers for clinical trials. A 2017 Research America poll found that only 24% of African Americans stated that their doctor or other healthcare practitioner had ever spoken to them about medical research. READ MORE HERE.
I decided to participate in a clinical trial because of a 4th progression on my ribs. I had been on this clinical trial from July 2018 - November 2021 and it worked. Because of a diagnosis of COVID pneumonia my doctor elected to take me off the trial. Researchers can't know if a particular drug will work on black women if we aren't apart of the recruitment and participation of that trial from beginning to end. Find our more about clinical trails on www.clincaltrials.org.
GRASP - Guiding Researchers and Advocates to Scientific Partnerships
CHANGING THE WAY WE APPROACH SCIENCE, SO WE CAN CHANGE LIVES.
Our patient-led program connects and empowers patients, clinicians and researchers to exchange ideas and learn from each other – so we can drive more meaningful and fundable research and make faster progress to improve therapies that will end cancer.
Learn more about GRASP at http://www.graspcancer.org
When diagnosed with breast cancer in 2009, HOPE is all I had. HOPE that the treatments would work without progression and HOPE that I would live longer than 5 years. My breast cancer journey began at the age of 43. While at the peak of my United States Air Force career, I was diagnosed with Stage IV HER2+ ER/PR+ invasive breast cancer. At the time I was a Senior Master Sergeant in the United States Air Force and a mother of one. Upon diagnosis, I was unaware that Stage IV stood for metastatic. Metastatic breast cancer meant that the tumor had invaded my body and spread through my lymph nodes to my liver and ribs. The first day I found out, I was on an emotional rollercoaster. Hearing those words, “You have breast cancer" felt like someone has just kicked me in my stomach. To this day, I don’t know how I pulled myself together to break the news to my family and friends. It was harder to inform my family because I couldn’t figure out how I was supposed to tell them that I had the same disease that my mom had succumbed to. Cancer had stolen my mom from me a few years earlier, and here I was walking on the same path only this time, I was determined to not only continue her legacy but build my own.
Resilience..........I was Down But I wasn't Out!
In 2011 I elected to have a bilateral mastectomy. I didn't want something that tried to kill me on my body. Many women will elect to have a mastectomy or go flat and that is their individual choice. Today, I walk into rooms filled with women that have demonstrated unwavering strength and tenacity in their diagnosis against breast cancer, and I hope I give them more reasons to keep on fighting and thriving.
In honor of...
Grace Evelyn Johnson
My mother died of Metastatic Breast Cancer on 17 August 2004. She was the epitome of love and joy to my soul. Everywhere I would go in the world she would come visit while I was in the United States Air Force. She really enjoyed traveling with me and seeing other parts of the world. I was in the military for 25 years and I can remember her and my dad coming to Okinawa, Japan for 3 months. I wish I had more time with her. There is not a day that goes by that I don’t miss her presence or her voice. I never understood breast cancer until I was diagnosed with MBC in 2009, 5 years after my mom died. I yearn for her love and I often cry because I miss her terribly. I know that she would understand the highs and the lows of breast cancer and would be right by my side during my most difficult times.
Metastatic Breast Cancer is breast cancer that has spread beyond the breast to a major organ like the brain, lung or liver. My mom’s breast cancer had spread to her lungs in 2001. When I was diagnosed in 2009 mine had spread to my liver and ribs. Everything I do and have done for the past 11 years is to carry on her legacy. I know she is up in heaven cheering me on every day. I get my strength and resiliency from her. I wake up every day and try to be a better Sheila because of her. She is truly my soul mate and my best friend. I just miss her so much and still grieve of her lost. Cancer stole her from me and to receive a diagnosis like hers that could potentially kill me was devastating.
But I reflected back to the days of how my mom fought so hard. She truly enjoyed life and she loved her family, my Dad and my 3 sisters. My advocacy is because of her and how African American women/men need to be properly educated and not forgotten. Our communities need to understand the effects that breast cancer has on the underserved. I will continue to be her voice and to continue her legacy. I promised that to myself and to God.