I was diagnosed with stage IIIB triple negative inflammatory breast cancer (IBC) in August 2003. That old medical saying, “When you hear hoof beats think horses, not zebras” did not apply to me. I was a zebra! Overnight, one breast had become hot, swollen, and the skin had the characteristic orange peel texture. Treatment was neoadjuvant chemotherapy at two week intervals, followed by a modified radical mastectomy and removal of all lymph nodes on that side of my body. Three weeks later radiation therapy began. The scary part of completing triple negative breast cancer treatment, was the feeling of being dropped into the deep side of the pool. At that time, there were no continuing therapy options. Treatment was finished, now we wait and see if you survive. Four women, who met through an online IBC support group, had lunch one day in the spring of 2004. Two years later, only two of us were alive and are still survivors today. The odds for those diagnosed with IBC have not changed since then.
I currently serve on the Board of Directors of the Inflammatory Breast Cancer Research Foundation, and edit their monthly newsletter, Focus on IBC. Best described as a non-practicing retired librarian, I previously worked on a state grant project for K-12 school libraries in Florida, so I knew what a Principal Investigator (PI) was, and how criteria were established and used to evaluate proposals. Both of my parents were diagnosed with cancer before the PubMed database of cancer literature was online and researching those cancers came with great difficulty. By the time my IBC was diagnosed, it was much easier to locate and read the relevant research which allowed me to be a full partner in all phases of my treatment decision making.
Several people who knew my passion for reading medical research and my experience with the grant process directed me to the Department of Defense (DoD) Breast Cancer Research Program (BCRP). The first time I served as a consumer reviewer, I was terrified! It did not seem possible that I would contribute anything valuable to the discussion, and my voice trembled as I spoke. On the first break, several of the scientific reviewers told me I was doing fine, and mentioned specific points I had addressed. None had ever met anyone who had survived inflammatory breast cancer. Since then I have served as a consumer reviewer several times, including mentoring two new consumer advocates.
In 2020, we live in a time of great uncertainty so knowing that the DoD BCRP is working towards ending breast cancer is a comfort. Although the panel met by phone conference this year, the presentations and discussion were every bit as lively as during an in person panel. Based on the breast cancer researchers I have met over the years, their commitment to ultimately ending breast cancer is total. It is a joy to meet new scientists who have worked in labs but never met a breast cancer survivor. Without exception they express a renewed commitment to their work on our behalf.
My husband and I were raised within the DoD. Our fathers were career Army officers beginning in World War II, continuing through Korea and Vietnam. We lived on military bases and attended schools all over the United States and the world. My husband also served 4 years during the Vietnam Era and our first child was born in a military hospital in Germany. We feel a deep and continuing obligation to support our military and my serving as a DoD BCRP consumer reviewer is one small way for me to give back.
Last updated Monday, January 3, 2022