Susan Leighton and Her Husband

Photos and text used with permission of
Susan Leighton.

My husband and I live in Huntsville, Alabama, where he retired from the US Army in 1992. We have one daughter, who lives in Dallas, Texas, with her husband and small son. They are expecting our granddaughter in November. I am the National Program Director of the Ovarian Cancer National Alliance's (OCNA) Survivors Teaching Students® Program.

I was diagnosed with stage IIIC ovarian cancer in July 1997 at the age of 48. Our daughter had just graduated high school and was getting ready to start college as I was starting chemotherapy. Following surgery and chemotherapy, I was declared in remission in November 1997. Eighteen short months later my cancer antigen (CA-125) levels started to increase. A change in CA level has been linked to cancer recurrence. I had surgery to remove a small tumor in my pelvis that proved to be benign and my CA-125 continued to increase. As there was no evidence of disease on scans and I had no symptoms, my gynecological oncologist and I decided to wait and watch. Almost eight years later I began to experience shortness of breath and back pain. A positron emission tomography (PET) scan revealed a very large tumor in my mid chest. The surgery removed an isolated, softball-sized tumor that was resting on my heart and compressing my left lung. Following surgery, my CA-125 returned to normal range and I have been in remission since without further chemotherapy.

Being diagnosed with ovarian cancer certainly changed my perspective of life. Suddenly, I went from helping my daughter plan for college to wondering if I would see her graduate, get married, and if I would hold my grandchildren. She asked me the night before we took her to college if I wanted her to hold off for a year. Right then I decided, I was going to survive this and no one was putting their life on hold for me.

From the day I was diagnosed I was determined that women would not go through this disease alone. After many false starts, we founded the Lilies of The Valley Ovarian Cancer Support and Awareness group in Huntsville in September 2004. In 2009 I decided to apply to become a Consumer Reviewer for the Ovarian Cancer Research Program (OCRP). As a veteran and the wife of a retired Army officer, I felt a connection to the Department of Defense and knew that their medical research teams were among the best in the world. My first opportunity to serve on a panel came shortly after I applied, and I was hooked. It was refreshing to see the cutting-edge research being proposed and to know that the patient's voice was being given credence at the table.

As the National Program Director of the OCNA Survivors Teaching Students® Program, I manage a program that takes survivors into the classrooms of medical, nursing, nurse practitioner, and physician assistant students nationwide. I am also an FDA patient representative, a Drug Information Association fellow, a patient advocate serving on two studies of ovarian cancer survivors, and am active as an advocate with ASCO, the American Society of Clinical Oncology. I am one of two patient advocates serving on the NCI Ovarian Cancer Task Force. Recognizing that the key to all of the research is funding, I am an Advocate Leader for the Ovarian Cancer National Alliance helping to direct our efforts on Capitol Hill and in my home state of Alabama. I have testified before the Senate Appropriations Subcommittee on Defense in support of funding for the OCRP.

I was diagnosed with stage I invasive ductal breast cancer in 2013. I am BRCA negative. When I was diagnosed with breast cancer in 2013 I was just about ready to take a step back from some of my advocacy work and enjoy retirement. As I sat in a room with four physicians telling me that I had three different treatment options, all with a 90+% cure rate, I realized that my work was far from done. A woman diagnosed with ovarian cancer today hears the same dire statistics I heard 18 years ago. She has about a 20% chance of surviving 5 years. Her initial treatment will be the same treatment that I had almost two decades earlier, and cure is not in the discussion. My advocacy work keeps me moving forward and turned me from a passive participant in my health care to an active advocate for myself and for other women in our disease community. Eighteen years ago I never would have been able to address senators but now I find this easy to do with the power of thousands of women giving me strength.

Last updated Thursday, May 26, 2022