Photos and text used with permission
of Desiree Walker
I am a two-time breast cancer victor. When I was diagnosed at the age of 38, I knew nothing about the disease. I sought a crash course in Breast Cancer 101. My objective as I began my breast cancer journey was to self-advocate, and for that I needed to equip myself with knowledge.
I researched tirelessly to arm myself with the facts. My efforts helped prep me for the consultations I had to build my healthcare team. Excellent patient/doctor communication is invaluable to me. Following discussions with my physicians, I underwent two lumpectomies (intended to achieve clear margins); then, radiation therapy and hormone therapy. My diagnosis caused me to speculate about how many other women knew little to nothing about breast cancer. Thus, the idea germinated to share my story with the goal of increasing breast cancer awareness, especially amongst young African American women.
Shortly after completing my treatment, I began to develop my voice as I shared my story through the Witness Project® of Harlem. This organization raises breast and cervical cancer awareness through their outreach efforts in New York City's African American communities. Later, I also lent my voice to Survivors in Spirit (SiS). SiS educated African American breast cancer survivors living in NYC about the American Society of Clinical Oncology (ASCO) guidelines and the importance of post-treatment surveillance. Telling my story became a "win win" - it was empowering to my audiences and therapeutic for my healing.
Shortly after my 8th cancerversary, I was diagnosed with a breast cancer recurrence. The diagnosis took me by surprise as, six months prior, I had a negative mammogram. Lots of questions whirled in my head! After hearing the term "tumor dormancy" a few times, I realized another crash course was necessary (i.e., Breast Cancer 301). Given the circumstances, I chose to have a bi-lateral mastectomy with reconstruction, chemo, targeted and hormone therapies. The numerous complications and hurdles made it quite a different experience! I began to wonder, Is it okay to be living but not feel alive? Is anyone focused on quality of life and survivorship? These questions were the catalyst that led me to become a patient advocate with a focus on research and legislation.
Enroute to my first New York State Breast Cancer Support & Education Network's Lobby Day in Albany, with SHARE: Dedicated Experienced Support for women facing breast and ovarian cancers, I learned about the National Breast Cancer Coalition's (NBCC) Advocacy Training. I immediately signed up so I could acquire the skillsets to be a more effective advocate. During NBCC's advocacy training, I learned about Project LEAD. I applied and was accepted into the program. Project LEAD is a five-day intensive science course covering the basics of cancer biology, genetics, epidemiology, research design, and advocacy. Now that's an advanced crash course! Being in treatment at the time of the course had its challenges; however, my scientific foundation was set. This was just what I needed to immerse myself into advocacy. During Project LEAD, I heard about the Department of Defense (DoD) Breast Cancer Research Program (BCRP). Although it sounded like a wonderful opportunity, I questioned if I was ready to be a consumer reviewer. The thought of critiquing research proposals, while in the grip of chemobrain, and participating on a panel with researchers and clinicians was daunting. After all, I wasn't seasoned. I also had doubts that the researchers and clinicians would welcome a patient perspective and be good listeners. In spite of my hesitancy, when SHARE nominated me I anxiously awaited the news regarding the status of my application. Although I was excited to have a "seat at the table" of such important work, it was not without trepidation. However, from the initial interview through the completion of my first in-person panel review, I was in awe of the staff and the process. The staff was very supportive and made the process, from training to writing the critiques to prepping for the in-person panel review, seamless. Being assigned a mentor made a world of difference, too. The orientation was helpful and provided an opportunity to meet other advocates with varying experiences. Both the panel chair and the Scientific Review Officer ensured that the in-person review panel ran smoothly, with every voice being heard. The researchers/scientists/clinicians did listen and often asked questions to further understand the patient perspective. As a first-timer, I learned a lot during the panel discussion, but I know everyone walked away with more insight. Working with the DoD BCRP gave me such a different understanding of research from behind the scenes. What a process! Such an awesome opportunity! Being diagnosed with breast cancer transformed me into an advocate seeking knowledge, one given the chance to "sit at the table" where discussions are being held and decisions are being made and where I can be a voice for the voiceless. This is how I turned my lemons (i.e., diagnosis) into lemonade (i.e., something useful). What an accomplishment!
Last updated Tuesday, August 25, 2020