Transforming Health Care through Innovative and Impactful Research

November 16, 2010, is the day my life changed. On the other end of the phone I heard my primary care physician saying, "It's very bad Susan, it's ovarian cancer." To state that my husband and I were completely stunned is an understatement. Just three weeks before, I'd had my annual checkup and everything was fine. Two weeks later, my belly grew 6 inches in just a few days. This was the beginning of my journey with advanced stage ovarian cancer. Although I didn't know it at the time, I was lucky that my physician immediately sent me for a CT scan - I later learned that some women with ovarian cancer are misdiagnosed for months and months and are sent from doctor to doctor and from specialist to specialist before being accurately diagnosed. There are some who never make it and lose their lives to misdiagnosis and delayed treatment. Although I certainly didn't think so at the time, I can now say that I'm thankful for the ascites that made my belly grow so quickly, because it was a tangible, identifiable symptom that led to the quick diagnosis and referral to a gynecological oncologist, the most appropriate specialist.

I got myself into "project mode" as I endured more medical tests and procedures, followed by surgery and chemotherapy over the next 6 months. This mindset offered protection by allowing me to think that if I followed the treatment plan and got through it, I would be done with cancer - I was determined to be the best cancer patient ever - but I also knew that I had a number of negative prognostic factors and my prognosis wasn't very good. After chemotherapy, the blood test and CT scan indicated that I was in remission.

Unfortunately, I was not lucky enough to be in the small percentage of women who have long-term remission, and I experienced my first recurrence about 6 months after first-line treatment was completed. I was surprised, and extremely disappointed, to learn that after the standard first-line treatment, the next step was trying repeated courses of different chemotherapy drugs. There's a list of about a dozen chemotherapy drugs used for ovarian cancer, and without knowing which is best or most effective for me, the recommendation was simply to start with the least toxic. The oncologist told me, "You'll be lucky to meet all these drugs since that's better than the alternative."

Three months into my journey, I was fortunate to learn about the ovarian cancer support group at the local Cancer Wellness Center. The very first ovarian cancer survivor that I met in this group had been diagnosed more than 25 years earlier. Another defining moment was meeting the wonderful women in this support group who were dealing with chronic recurrent ovarian cancer. Before joining the group, I heard some laughter coming from the room and I thought, "What's wrong with these women, how can they be laughing? Don't they know they have cancer?" But these women actually taught me how to live with recurrent cancer and to do it with courage, grace, and dignity. One of these survivors taught me the importance of learning about the available therapies, including newer treatments available only through clinical trials, and to work in collaboration with my medical team to select the best treatment. I chose to participate in a clinical trial that offered a treatment considered a good match for my genetic status. This treatment provided me 18 months without chemotherapy or side effects, before I had my second recurrence. After more research, I opted for one of the standard care treatments supplemented with an off-label medication, which, in early studies, improved outcomes for women with ovarian cancer. I've completed this round of chemotherapy, and the follow-up tests indicate no evidence of disease. I am still hopeful that perhaps this time I will have a nice long remission. I am truly indebted to the women in this support group and cannot imagine going through this journey without them.

It is also very important to me to recognize the impact that recurrent ovarian cancer has on the family and the importance of family support. Through this journey, my husband has been a true partner going through every step with me and I know that his participation is definitely responsible for the quality of life that I've been able to maintain through this journey. Although I no longer focus on the dismal survival statistics for women with ovarian cancer, I do recognize that the odds are against me. Through it all, I'm determined to stay alive to reap the rewards of better treatments as they become available. And the path to better treatments with improved outcomes is through research. The DoD Ovarian Cancer Research Program (OCRP) is a critical part of that effort. Serving as a peer review consumer reviewer for the OCRP, I represented women with ovarian cancer and provided the survivor's point of view in reviewing research proposals. I was impressed with the innovative ideas for improving ovarian cancer treatments. I gained so much understanding about the novel and creative methods that scientists are using in their work, and I became aware of the number of scientists committed to improving outcomes for women with ovarian cancer. I only hope that my participation as a consumer reviewer will in some small way help to improve the lives of women with ovarian cancer.

Because of this cancer, I have re-evaluated my priorities: I try to focus my time and energy on the people and things most important to me, and I have learned - most of the time - not to sweat the small stuff.