Susan Siegel
Photo and text used with permission of Susan Siegel

I was diagnosed with breast cancer in 2007 at the age of 49. My diagnosis did not come as a great surprise. In the 1970’s, both my mother and her sister had breast cancer. They both had mastectomies, and neither had a recurrence. During the 1980’s, breast cancer came to my generation with a bang. A first cousin on my father’s side was diagnosed with breast cancer and died at age 31. Five years after that, my older sister was diagnosed when she was 7 months pregnant with her second child. She died at the age of 39, just after her son’s first birthday.

While the BRCA genes had not yet been identified at the time of my cousin’s and sister’s deaths, it didn’t take a rocket scientist to know that I was at high risk for breast cancer. Despite believing that I was different than the rest of my family and I would never have breast cancer, I was determined to be vigilant and was screened regularly. This brought on its own set of anxieties. There were always callbacks for additional x-rays. I had my first ultrasound 3 days before I was scheduled to travel to India for my job. There were also multiple biopsies. My annual mammogram became a time of great dread.

So in 2007 when I was asked to stay for an ultrasound after my mammogram, I was not surprised, and not even very scared. But then I saw the image. I knew it looked different than anything I had seen in the past. And the diagnosis was not a big shock.

It was stage 1, and at first I thought that I could have a lumpectomy, radiation and quickly get on with my life. I was still in denial. But after I found that I was BRCA1 positive, my decisions changed. Because of the BRCA mutation, my chances of recurrence and/or a second breast cancer were high. And now I also had the risk of ovarian cancer. And so I embarked on a series of 6 surgeries over 14 months.

Once my surgeries were over, I knew it was time for me to do something. I may have been in denial of the realities of breast cancer in the past, but now my eyes were open. I participated in a walk. But while that felt good physically, it didn’t satisfy my need to make a difference. I discovered the Virginia Breast Cancer Foundation and began volunteering. I learned a lot and met some incredible advocates. I soon found my own voice as a breast cancer advocate.

I knew that to be effective, I had to be educated. I attended the National Breast Cancer Coalition’s Project Lead Institute, and learned the basics about breast cancer. I attended the San Antonio Breast Cancer Symposium and knew that I wanted to influence research.

Soon after that, I became a Consumer Review for the DoD BCRP. I was inspired by the dedication and passion of the researchers, clinicians and other Consumer Reviewers. And I found that I not only had an opinion, but my opinion mattered, and people wanted to hear it. I was hooked.

Every year, I advocate for continued funding for the DoD BCRP. I talk about the great research that has come out of the program and how important this program is for those of us who have ever had to face breast cancer, those who are currently facing it, and those who might have to face it in the future. I talk about what it feels like when a researcher tells you that your words changed their opinion of the value of the research.

It is a great honor to serve on a review panel. You never know, an application I review could lead to a future breakthrough in breast cancer.

Last updated Thursday, May 26, 2022