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Susan Leighton

Photos and text used with permission of
Susan Leighton.

As the daughter of a career Air Force man, I learned early on in life that making plans is great but learning to adapt when life changes those plans is the key to success. I cannot tell you the number of times our plans were changed when new orders came in, and we packed up and moved on to a new city, a new school, and new friends. So one would think when I became an adult I would seek out stability so I could take charge of my own destiny. Finishing high school in Bossier City, Louisiana, where my family had retired from the military, I had my mind set on heading off to college and becoming a researcher in biological sciences. About halfway through, however, life stepped up and showed me that all of my plans needed to be put on hold. After trying to figure out what to do, I joined the United States Army thinking I would be able to use the GI Bill to complete my education. Once again, my personal plans took a backseat when I met the man of my dreams and got married. I had gone from Air Force daughter to student to soldier to Army wife, and it looked as though my life would once again be one of moving our family from duty station to duty station. During one short stateside tour, I was able to complete my undergraduate degree in biology. After this, while my husband was on an unaccompanied tour, I completed my Master's degree in Psychology. Although it was not research, it was a science degree that I could use as we traveled the world, and I eventually became a Supervisory Personnel Management Specialist with the Department of the Army Civilian Service.

When we returned from Europe following our last tour in 1991, we headed to Huntsville, Alabama, where my husband retired from the Army, our daughter entered high school, and I started job hunting. It did not take me long to realize that I must do something less stressful; I had this feeling that I needed my energy for something else, something was on the horizon. That feeling proved to be correct in 1997 when I was diagnosed with Stage IIIC ovarian cancer. My goal became surviving a disease that has less than a 20% survival rate at 5 years. I spent hours researching the disease, treatment, clinical trials, support groups, national organizations. I was disheartened to find that the mortality rates of this disease had not changed significantly in thirty years. I got on with the business of recovering from surgery and having chemotherapy, and soon I was in remission. Realizing that ovarian cancer research was in its infancy compared to other cancers, I knew that I had to get involved not only for myself but for those women at risk of being diagnosed.

My plan at that point was to tackle three areas: support for those whose lives have been touched by ovarian cancer, awareness of the symptoms of the disease, and pushing for more research to find a screening test and better treatments. In 2004, I became one of the founding members of the Lilies of the Valley, an ovarian cancer support and awareness group based in Huntsville. This group started with ten women and now has grown to over 100 members. Offering a support group to members and another for caregivers, we have provided awareness materials to over 70,000 women in the Tennessee Valley.

As 2005 rolled around, I had to step away from my third goal while I dealt with a recurrence of my disease. I had a large tumor develop in my chest; it was found to be metastatic ovarian cancer. As surgery removed the tumor, I again had no evidence of disease, and I have remained in remission since then. I reviewed the statistics once more and found that the mortality rate had not changed. I knew that now it was time to act. I became involved with the Ovarian Cancer National Alliance (OCNA), a national group whose mission is to advance the interests of women with ovarian cancer, advocate at a national level for an increase in research funding for the development of an early detection test, and improve health care practices and life-saving protocols. I helped our local group develop and distribute more awareness materials, launched a speaking program to provide information to women's groups, and I participated in the Survivors Teaching Students program, through which survivors speak to medical and nursing students about ovarian cancer. I also helped establish a network of advocates who actively communicate with elected officials regarding the need for effective ovarian cancer legislation and for increased government funding for research. Through OCNA, I learned of the Department of Defense Ovarian Cancer Research Program (OCRP) and the opportunity to serve as a Consumer Reviewer. I applied and was accepted.

Serving as a Consumer Reviewer provided me with a tremendous sense of empowerment; I was taking action that could help move forward research that could save my life or the lives of other ovarian cancer survivors. Certainly I was nervous when I received the grant proposals and realized that I would be defending my critique of those proposals to a room full of scientists and researchers who had an extremely in-depth understanding of the information presented. After polling the members of my support group on what they hoped to see develop from future research, I read and critiqued the proposals based on that information and then headed off to join the panel. In that first session of the OCRP, I sensed that the scientists truly valued my opinion and understood that I was speaking for the entire ovarian cancer patient population; I was putting a face on the disease, something they rarely saw in their labs. They were more than willing to help me understand information that was technically over my head, and they truly listened to my opinion. It was not uncommon for them to help me see things in a different light, nor for me to convince them of the importance of the potential impact of certain proposals. It was truly a collaborative effort. Since my involvement in this program, which coincidentally was initiated in 1997, the year I was diagnosed with ovarian cancer, I have seen more and more unique exciting research in the field of ovarian cancer being brought to the table for consideration. There is a strong commitment among the research community to find cures for this heterogeneous disease.

My work with the OCRP has spurred me on to work with other advocacy groups, and I recently attended the Focus on Research Scholars Program of the Research Advocacy Network. This program includes instruction in the basic scientific principles to help advocates better understand grant proposals and completed studies so they can report back to their constituency about new and exciting research. With this group, I attended the 2011 Conference of the American Society of Clinical Oncology and met with physicians and researchers active in ovarian cancer. In June of this year, I was asked by the OCNA to testify before the Senate Appropriations Subcommittee on Defense regarding the need for funding of the OCRP. Having served in the past as a Consumer Reviewer for this vital program, I was able to relate my personal experience to the subcommittee, stressing the importance of continued research to improve outcomes for women diagnosed with this disease.

So how has ovarian cancer changed my life? Certainly, it made me examine my mortality while challenging me to live a fuller, more satisfying life. I now take time to go "RV-ing" with my husband to explore the country he defended for over 20 years, I spend time with my daughter and her husband and our families, I enjoy my hobbies of crocheting, photography, and genealogy, and I set time aside just to enjoy life. But more importantly, it motivated me to become involved in trying to make a change for those women affected by ovarian cancer and those at risk of developing it in the future. Dealing with ovarian cancer has taught me that one woman can make a difference and speak for those who cannot. Quite surprisingly, this experience has taken me out of my comfort zone and challenged me to get involved!