when I had surgery for a pelvic mass that was later diagnosed as ovarian cancer. As a medical education faculty member, I had the capability to research this disease, which I knew very little about. The one thing I learned was that this cancer was very deadly, a fact that was echoed by an oncologist I spoke with shortly after my diagnosis. The only thing I remember after waking up from my surgery was saying to my gynecologist oncologist "Find me a clinical trial". Three weeks later at my next appointment, he had in his hand a consent form and information about an open clinical trial. After our discussion I signed the form and joined several other women on a Phase 2 frontline clinical trial of a new treatment. Many women over the years have asked me why I joined a frontline clinical trial. I would always say that it made sense because of my rare tumor type. But the rest of the story is that once I realized the chances of surviving this disease, I felt I simply had nothing to lose. Besides, I just might be able to help women with this disease coming after me.

Since then I have come to know numerous courageous women that have also participated in clinical trials. Others have taken up the cause to advocate for more ovarian cancer research programs, raise money for education and awareness or serve on committees to review ovarian cancer programs. If you are one of these women, please continue your efforts. Without these programs, we simply will not find a cure this disease. But no matter how much ovarian cancer research is conducted, it is impossible to move these new discoveries into clinical practice without clinical trial participation.
I have had the opportunity to serve as a research patient advocate on many clinical trial and research committees including the National Cancer Institute Gynecologic Cancer and Patient Advocate Steering Committees, NRG Oncology Rare Tumor and Surgical Oncology Committees, the Department of Defense (CDMRP) Ovarian Cancer peer review panels and The University of Texas Southwestern Medical Center Protocol Review and Monitoring Committee. I was astonished to learn that many trials take years to accrue enough patients. And some trials are closed because of a lack of enrollment. I have often wondered if there were effective treatments that never made it to patients because of the lack of clinical trial participation (less than 5% of adults participate in clinical trials). We are surviving longer because of newer treatments, but the ovarian cancer mortality rate has remained relatively unchanged for the past 20 years. This is in comparison to the dramatically improving outlook for childhood cancer which many experts credit to the high clinical trial participation rate - which is about 50%. Granted, clinical trials are not for everyone. There is no guarantee that participation in a clinical trial will change the direction of your disease. But I felt compelled to form this nonprofit organization so women will be aware of the harsh facts of this disease (see Just the Facts), find links to websites that discuss the pros and cons of clinical trial participation and be able to easily find open clinical trials (Clinical Trial Connection). I hope you will take the time to investigate clinical trials, start a conversation with others affected by this disease and learn from other women that have enrolled in ovarian cancer clinical trials. Lastly, a special thanks to my fellow survivors that assisted in the design of this website. I continue to be inspired by your courage.

Take care and thank you for your interest.

Debbie Miller, Ph.D.