Abstract A002: Collaboration between the physician/researcher and patient/survivor is key
Authors: Binder Deborah J. 
Published: March 2024

In May 2009, I went to see my primary care physician for a routine annual physical exam. I told her that I thought I was starting menopause. She did a typical physical including a pelvic exam and did not notice anything abnormal; but she decided to send me for a vaginal ultrasound. The ultrasound revealed that both my ovaries were massive. My physician sent me to my gynecologist for further follow up. My gynecologist advised me to have a complete hysterectomy and she had a CA-125 blood test done. It came back elevated. She told me I had ovarian cysts. A family friend, an OB-GYN, reviewed my test results and urged me to get a second opinion with a gynecological oncologist. Fortunately, I was able to see a Gyn-Onc who scheduled surgery. This doctor confirmed that I had complex ovarian cysts but could not determine if there was any malignancy until my surgery. Urging patients to see gynecological oncologists is one of the most important things that can be done to save women’s lives. During my debulking surgery it was discovered that I had High Grade Epithelial Ovarian Cancer. I started a six-month chemotherapy regime of Taxol and Carboplatin. It was hard on my body—I became anemic, required blood transfusions, had digestive problems, and experienced a level of fatigue that I never knew existed. Halfway through chemo I had genetic counseling and decided to take the BRCA1 gene mutation test. I tested positive—most likely because of my Eastern European Ashkenazi Jewish heritage. There is a history of breast cancer, pancreatic cancer, colon cancer and brain cancer in my family. Due to my BRCA1+ status I had a prophylactic mastectomy and breast reconstruction which took place in December 2010. Here is a video that I created to help bring awareness to the importance of genetic testing: https://youtu.be/Fm72svK2zKw I am a Research Advocate for OVCA patients and survivors. I participate in clinical trials. I teach yoga and mindfulness practices at retreats for cancer survivors. I participate in OCRA’s Survivors Teaching Students program at the University of Washington Medical School. I am a peer mentor for Imerman’s Angels, OCRA and Sharsheret. I serve as a Survivor Ambassador for: Clearity Foundation, Amy K. Rosenthal Foundation, Rivkin Foundation and Powell Drescher OVCA Research Foundation. I am a peer reviewer for the DOD’s Ovarian OCRP. In April 2023 I attended the Annual Meeting of American Association for Cancer Research as part of the AACR Scientist↔Survivor Program. During the poster sessions I met almost 100 researchers whose focus is Ovarian Cancer and only six of them had ever met an actual Ovarian Cancer patient/survivor. I want my survivorship to impact the discovery of effective tests for early diagnosis and treatment of OVCA. I believe that the collaboration between the physician/researcher and the patient/survivor will bring new solutions to dealing with an OVCA diagnosis and treatments.

Citation Format: Deborah J. Binder. Collaboration between the physician/researcher and patient/survivor is key [abstract]. In: Proceedings of the AACR Special Conference on Ovarian Cancer; 2023 Oct 5-7; Boston, Massachusetts. Philadelphia (PA): AACR; Cancer Res 2024;84(5 Suppl_2):Abstract nr A002.