From Patient to Research Patient Advocate

TON - October 2011 Vol 4 No 7 — October 19, 2011

Peg FordSince we first reported on the Ovarian Cancer National Alliance and its Survivors Teaching Students: Saving Women’s Lives initiative (September/October 2009), the San Diego chapter has expanded its program into nursing schools and further empowered a research patient advocate. Nationally, the program currently presents in 140 medical, nursing, and physician assistant schools and reaches more than 5000 students annually. In their own words, founder of the San Diego chapter, Peg Ford, and presenter Cindy Silver detail how and why the program flourished. For more information on the Ovarian Cancer National Alliance, visit www.ovariancancer.org.


My life has changed drastically in many ways since being diagnosed with ovarian cancer in early 2007. Before my encounter with ovarian cancer, I had embraced alternative healing methods. This was to change, however, when a relationship with Western medicine was needed to save my life. In a short time, I discovered how fortunate I was to be referred quickly to a gynecologic oncologist. Although most women diagnosed with ovarian cancer are diagnosed at stage III or IV, my cancer was caught at stage I, before it had spread. After my surgeon removed a huge mass that completely filled my abdomen, concern regarding recurrence led him to prescribe chemotherapy as a precautionary measure.

What awaited me in the “cure” was to put my body at greater risk. I did not tolerate chemotherapy well. In the early morning hours of day 5 of the first series of treatments my pulse rate suddenly dropped to 29 bpm. All chemotherapy was stopped. Then, the next morning my pulse rate dropped again, to 34 bpm. I spent an additional 4 days in the hospital for testing and monitoring. The findings indicated that the chemotherapy regimen, in particular cisplatin, could be the source of the problem, causing the slow heart action I experienced. Two years later, this severe adverse reaction had a name, platinum hypersensitivity reaction. For me, chemotherapy was discontinued. Luckily, my tumor was a very rare type, a sex-cord stromal tumor, and removed at stage I, so changing to observation (or watchful waiting) was an option.

While doing research to understand the disease that engulfed me, I discovered Survivors Teaching Students (STS): Saving Women’s Lives, an ovarian cancer education program for medical students that is sponsored by the Ovarian Cancer National Alliance (OCNA). OCNA is a survivor-led, national umbrella organization that unites cancer activists, women’s health advocates, healthcare providers, and researchers in the battle against ovarian cancer.

 Figure. Third-year medical students participate in a Survivors Teaching Students: Saving Women’s Lives session at University of California San Diego School of Medicine 
Figure. Third-year medical students participate in a Survivors Teaching Students: Saving Women’s Lives session at
University of California San Diego School of Medicine

Knowing how fortunate I was to have the opportunity and realizing the important role advocates can play, I launched an STS chapter at the University of California San Diego (UCSD) School of Medicine in December of 2008. The goal was to address the issue of early detection and the urgent need for women to be referred to a gynecologic oncologist when ovarian cancer is first suspected. STS San Diego brings ovarian cancer survivors into the classroom to share their stories.

In the 1-hour presentation, 3 women of diverse backgrounds illustrate the difficulty of early diagnosis and what happened to them as a result. They give ovarian cancer a human face and voice.

This August, we started our fourth school year, presenting once every 6- week obstetrician (OB)/gynecologist (GYN) rotation for third-year medical students at UCSD. We also present to the OB/GYN and family medicine residency programs at UCSD. In May 2011, the program expanded, now including Azusa Pacific University School of Nursing. So far, we have presented to the medical-surgical class and the women’s health and maternity class. Plans are under way to implement the program in the remaining 8 nursing schools in San Diego County.

I also saw the need to reach practicing physicians who have been out of medical school for 10 years or more. This led to my collaboration with a well-known Southern California gynecologic oncologist, Afshin Bahador, MD, who presents CME Grand Rounds at major hospital campuses for Scripps Health and Sharp Healthcare. Bahador presents the clinical information, and our group presents the human side. This successful team effort has presented 6 Grand Rounds reaching 353 medical doctors and healthcare pro viders in the past 2 years.

In addition, I launched the Ovarian Cancer Advocacy Alliance of San Diego, an organization that participates on the local, state, national, and international level in research patient advocacy, incorporating the STS program as the flagship educational arm.

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