When Terri Gerace was diagnosed with granulosa cell tumor, a rare form of ovarian cancer, in 2012, she had already gathered years of experience dealing with the illness. After all, her mother had listened to a doctor announce the exact same diagnosis in the late 1990s, when the cancer had already advanced to a late stage. It’s the same for many people, says Gerace, since granulosa cell tumors are notorious for exhibiting subtle symptoms commonly misconstrued as lesser problems like menopause or intestinal issues. But after suffering through rounds of chemotherapy and various surgeries, just as her mother did, Gerace realized that her biggest problem wasn’t just the aftereffects of these treatments, but the lack of information related to the disease, even among medical professionals
In what might be referred to as a “citizen science” approach to research, Gerace decided in 2015 to start a local branch of the Ovarian Cancer Research Fund Alliance called “Survivors Teaching Students,” a network of women—largely contained to a carefully vetted Facebook group—who share their personal experiences with the rare disease. Inspired by OCRFA’s online support group, Inspire, which Gerace had joined earlier in her journey, Gerace helps collect this new data and shares it with LSU medical students in hopes that it might help progress the search for a cure.
“Even MD Anderson struggles to gain knowledge on rare cancers like this,” she says. “It doesn’t respond to treatment easily, and it tends to be slow-moving, but in some cases can be very aggressive. To go through chemotherapy in the first place is such a barbaric thing; in Europe they don’t even do it for this type of cancer.”
Gerace hopes that gathering together a group of patients and survivors might help contribute to the field of cancer research at large.
“At the first conference I attended,” says Gerace, “the keynote speaker was breaking down the different types of ovarian cancer in a presentation, and my type of cancer was not included. That was discouraging, especially since I’d paid so much money to travel and learn more.”
Now, she hopes to organize more trips like the ones she’s already arranged to places like Denver and Niagara Falls, where women have traveled from as far as Europe to share their experiences and attend conferences together. Gerace even takes her cause to Washington, D.C. twice a year, where she continues to lobby for increased cancer research. In addition, she hopes to be able to arrange for scholarships or comparable funding to help cancer patients afford their treatments more easily.
“Sadly,” she says, “finding survivors is the hardest part of forming these groups. We’re always looking for more voices.” ocrfa.org
What do you love about the volunteer efforts that you do?
My volunteer efforts afford me the opportunity to help other women who are just beginning the cancer journey. It is a time of huge emotional upheaval, and it is very comforting to be able to share those moments with a newly diagnosed woman and help her devise a game plan.
How is your cause making a difference?
I am promoting awareness and educating women and healthcare providers about the subtle symptoms of ovarian cancer. Early diagnosis is crucial to increase survival rates, but unfortunately only 20% of women are diagnosed at an early stage. A woman diagnosed today has less than a 50% chance of five-year survival, a statistic that has remained largely unchanged in 40 years.
What do you hope to achieve?
I hope to make ovarian cancer symptoms just as well-known as those of breast cancer. I would love to see PSAs on television during the month of September and ovarian cancer symptom charts displayed in physicians’ offices. And my ultimate goal is to establish a state organization to coordinate ovarian cancer activities. I’ve been in and out of treatment for the majority of the last five years, and that has affected my ability to move forward with my plans.