Putting a Face to Ovarian Cancer

It’s often thought that medical professionals are the experts in all areas of care, but what happens when a cancer survivor becomes the educator? Could learning early disease signs lead to a physician spotting it sooner, when it’s more treatable? Would health care teams have a better understanding of survivors’ emotional burdens?

The Survivors Teaching Students (STS) program, which is part of the Ovarian Cancer Research Fund Alliance (OCRFA), works to bridge these gaps between patients and providers. That’s why it puts ovarian cancer survivors — and some caregivers — into the classroom with medical and nursing students.

The concept came to life in 2002 after Betty Reiser, a stage 1 survivor from New York, started a conversation with her physician. To date, the program is offered in 281 health care programs in 35 states, the District of Columbia, the Virgin Islands, the United Kingdom, Canada and Australia.

Since 2007, more than 50,000 students have been reached through STS by nearly 900 volunteers. “As survivors unite around the globe on World Ovarian Cancer Day to increase awareness of the disease, OCRFA partners with advocacy groups in many countries all year long, offering STS to continue this global awareness effort,” Susan Leighton, national program director for STS, said in an interview with Heal.

Leighton received a diagnosis of stage 3C ovarian cancer in 1997 after being misdiagnosed twice. “I had been suffering for six months with abdominal pain, a little back pain and bad gastrointestinal (GI) issues,” Leighton said. “I went to see my general practitioner and he said, ‘Hmm… sounds like irritable bowel syndrome.’”

He gave her medicine, but the symptoms didn’t go away. When Leighton went back, he was sure this time that it was her gallbladder and sent her for an ultrasound.

“I saw the ultrasound technician’s face. Then, he turned the screen to the wall,” Leighton recalled. “He said, ‘I have to go get a doctor.’ It took the doctor one look and he said ‘You need a CT scan. And, you need it now.’”

It was a Friday at 5:30 p.m., Leighton told the doctor she would be back on Monday. But the doctor said it couldn’t wait. Right there, she learned that her abdomen was filled with fluid. She was referred to a gynecologic oncologist in Birmingham, Alabama, and the next day had surgery. “The frustrating part to me is I didn’t know about those symptoms,” she said.

Leighton didn’t want other women to experience what she had, so she set out to see if there was a support group that she could start. After a recurrence in 2005, Leighton learned about STS and immediately wanted to know how she could bring it to Alabama.

The STS program focuses on key areas such as ovarian cancer signs and symptoms, risk factors and preventive factors. “One key message is that they absolutely need to refer a patient to a gynecologic oncologist if they suspect ovarian cancer,” Leighton said.

Survivors go through online training with a toolkit and webinar. The classes usually are given by three to four women, or sometimes male caregivers, who share their personal stories with the students.

“It amazes me to see the empathy and the concern,” Leighton said. “The questions we get are: How do you want people to deliver the news? What can physicians do to help you through this? They are more than just there for the education. They really want to connect with people.”

Students are asked to fill out pre- and post-evaluations to measure what they knew coming in versus what they learned from the STS program.

“The women really stressed that we, as providers, should be aware of GI symptoms, specifically early satiety and bloating, as warning signs of ovarian cancer,” Jeremy Weiser, a University of California, San Francisco (UCSF) medical student, said. “Hearing personal stories will help me keep this in mind when I meet patients in the future. In the context of learning about ovarian cancer in textbooks, it's always meaningful to meet people who have beautiful lives and stories impacted by what we learn.”

Amalia Kotlyar, a UCSF third-year medical student, expressed that the program will help her to listen to patients’ symptoms — no matter how vague — and really make them feel comfortable sharing their concerns.

“There is no right or wrong way to be a survivor,” Kotlyar said. “It’s a traumatic experience to be diagnosed with a life-threatening cancer and go through treatment not knowing what the outcome will be. Some women cope by focusing on it and being an advocate, such as the women on the panel, while other women need to spend time more privately to figure out how to move on, and some move on quickly, never looking back. All those things are OK. Find the way that feels right to you.”

For Leighton the power of the program hit her as she was walking through a medical facility a few years ago.

“This guy in a white coat starts saying, ‘Hi! Hi!’ and I looked at him and thought, ‘I have no clue who you are,’” she explained. “He said, ‘I know you. You presented your story about ovarian cancer to my medical school class. I’m now a fellow. I changed my specialty to become a gynecologic oncologist because of your presentation. I diagnosed my first case of ovarian cancer last week and I diagnosed it at stage 1.’ Right there, I dissolved into tears and thought, that’s why we do this.”

To learn more about Survivors Teaching Students visit, ocrfa.org/get-involved/survivors-teaching-students/.