My breast cancer journey started five months after getting married in 2012. Following a miscarriage, I had an appointment with my obstetrician-gynecologist (OBGYN) where I asked about the nipple discharge that had begun during the pregnancy. She immediately sent me for a mammogram that led to a biopsy that they said was benign. A couple months later, I had a procedure related to my miscarriage, and a top breast cancer doctor also remove a nodule in my breast. As soon as I got home, the surgeon’s nurse called and told me that I had ductal carcinoma in situ (DCIS) breast cancer. After multiple lumpectomies that did not get clear margins, I ended up having a bilateral mastectomy. As a young woman, I felt a real sense of loss. I felt scarred and no matter how hard I have tried to look through different lenses or not look back at that time, that scar will always be there as a reminder of where I was.
I had the most wonderful nurse navigator throughout my breast cancer journey. I was, not ashamed, but afraid, and did not want anyone to know what was really going on; therefore, I went to the appointments alone. Finally, when it was time for surgery, I included my husband and we began having the difficult conversations with my mom and the rest of my family. My nurse navigator came to my first surgery and sat with my mom and husband, explaining things to them as she had done with me. She had literally held my hand during the first biopsy and introduced me to different advocacy organizations, and now she was at my first surgery supporting my family as she supported me.
Because I was only 35 years old, my nurse navigator introduced me to the Young Survivors Coalition (YSC). By chance, not even 30 days after my diagnosis, YSC was holding a conference in Seattle, WA, and she helped me get a grant to attend. I was able to go and meet other young people who had been through what was just starting for me and to see that I was not alone. I learned about self-advocacy and began to understand it was my right to get a second opinion or even a third opinion and to ensure my medical team was the one that was best for me. I could question the doctor and I had the option to choose the treatment for which I was most comfortable. That is where my advocacy started, and I continue to work with the YSC as a facilitator at their conferences and as a RISE advocate.
In addition to my work with the YSC, I attended the National Breast Cancer Coalition (NBCC) Project LEAD because I wanted to better understand the true science behind cancer and how much goes into cancer research. I also sit on the National Quality Forum’s Surgery Committee where I was recommended by the National Coalition for Cancer Survivorship (NCCS). On this committee, I work to help set the standards that are important to a patient and to make sure the average person can understand those standards so they can be compliant and live longer. I am very much engaged and enjoy this particular program because of what it does and what it brings to the forefront for patients. Not just cancer patients, but all patients.
I serve as a Young Advocate for Living Beyond Breast Cancer (LBCC) and two years after my initial diagnosis, the LBCC program sponsored me to serve as a consumer reviewer for the DOD Breast Cancer Research Program (BCRP). My first time serving as a reviewer for the BCRP was very scary. I began receiving applications and trying to review them and I remember thinking “what did I sign up for?” However, once I was at the peer review meeting and began meeting the scientists, I started to breathe again. The second time there was not as much anxiety and by the third time, I was able to speak up more confidently and calmly.
As a peer reviewer, I feel like I can have the conversations that need to be had with the scientists and experts, with my voice heard about what was positive or what was negative. It is exciting to see consumers and scientists working together, fostering relationships through the research to eradicate cancer. Knowing a consumer’s voice was there and being advocated, one way or another, is wonderful. For me, it has been an awesome opportunity to make connections through the BCRP and know that there are other people that are passionate about the same thing that I am.
In addition to my advocacy work and serving as a consumer reviewer for the DOD BCRP, I decided to go back to school and graduated in May of 2020 with a Master’s degree in Health Law and Innovation. As scientific breakthroughs are made and guidelines and regulations for patients come to the forefront, I want to be there. Breast cancer is a hard and lonely road to be on, and focusing on policies surrounding patient care is so important to me.
I consider it a privilege to be a part of ensuring that the DOD BCRP grants are impactful with the hope to eradicate breast cancer or at least to change the trajectory for those with breast cancer, including young women of color like myself. The DOD BCRP program is the machine behind the innovation and the medications and therapies that are being studied and developed to ensure that future breast cancer patients will not have to deal with the unbearable side effects that we are experiencing today. My hope is for everyone to be beautiful, be yourself, and embrace all the random feelings and emotions that they may have as they are diagnosed. Understand that you can come out on the other side and the other side is just as beautiful as the one you were on before.
Last updated Tuesday, November 23, 2021