Ovarian Cancer Survivors Share Their Stories

~ By Mary Phillips, President, Colorado Ovarian Cancer Alliance (COCA) ~

The medical students are so young. They sit in a semi-circle, perfectly still, staring at us – you could hear a pin drop as we tell our stories. We are three women who have survived ovarian cancer so far, some of us still in treatment or in treatment again for a cancer recurrence, and our prognoses are dismal. We are at the medical school to try to save the lives of other women. We want them to live longer than we are likely to live.

Survivors Teaching Students: Saving Women’s Lives® (STS) is a program created by the Ovarian Cancer National Alliance and carried out in Colorado by the Colorado Ovarian Cancer Alliance. Every six or seven weeks three survivors speak to approximately 25 third-year University of Colorado medical students about how we were diagnosed, or misdiagnosed, our treatment and where we are today.

I’m one of the STS speakers. Out of the blue during the winter of 2005 my waistline began to expand, growing two inches during a month and a half. Without a thought about cancer I went to see my gynecologist to find out what was going on. Two hours later I was looking at my six-inch tumor on an ultrasound monitor, and three days after that I received a Stage III ovarian cancer diagnosis. My world turned upside down. I had major abdominal surgery and eight sessions of chemotherapy. To my surprise and great relief by six months after my diagnosis I was in remission. I’m one of the lucky 30% of women with Stage III diagnoses who survive past five years, and one of the very lucky 10% who have (so far, knock wood!) not recurred and may be fully cured. I was so very fortunate that my doctor knew the symptoms of ovarian cancer.

Ovarian cancer is tough to diagnose. Our goal with STS is to bring ovarian cancer to the front of these medical students’ minds so that when they are doctors they will remember what happened to us and think of ovarian cancer if a woman comes to them with our symptoms. There is no universally accepted screening test for ovarian cancer (the Pap test detects cervical cancer, not ovarian cancer) and ovarian cancer is never the most frequent diagnosis for any of its symptoms. More than 50% of women are initially misdiagnosed, and over 80% of ovarian cancers are detected late, for Stages III and IV (metastasized) cancer, when survival is unlikely.

Almost all women diagnosed with ovarian cancer experience one of these four most frequent symptoms: bloating, feeling full quickly when eating, abdominal pain, and urinary urgency or frequency. Unfortunately, just like me, most women and most medical clinicians don’t have a clue that these symptoms may indicate ovarian cancer. Doctors regularly tell women that their ovarian cancer symptoms are caused by irritable bowel syndrome, bladder infection, menopause, stress or some other nonlethal ailment, and a correct diagnosis is sometimes delayed for many months while the cancer continues to spread. We tell the students that we just want them to rule out ovarian cancer because it’s so deadly, before they go on to make a more probable diagnosis of something less lethal.

Early detection is key to survival. Women diagnosed at Stage I have more than a 90% chance of surviving past five years. If diagnosis is at Stage III or IV after the cancer has spread, 70% to 80% of women will die before five years is up.

Our goal with STS is to teach medical students that they can save the lives of their future patients if they learn and can recognize the symptoms of ovarian cancer. The students know this is important; we can see it in their faces as they listen to us, and we think that our stories will help them to remember.

The mission of the Colorado Ovarian Cancer Alliance is to provide support and to promote awareness and early detection of ovarian cancer through advocacy and education. To learn more about COCA and its programs, visit http://colo-ovariancancer.org/.

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