Team Terri

My mom was an ovarian cancer survivor and in 2012, Ibecame one too.
Even after years of thorough exams and annual checkups withmy mom’s gynecological oncologist, I was surprised to bediagnosed with a rare form of ovarian cancer called GranulosaCell Tumor, or GCT. Through my web search for information, Icame across the Ovarian Cancer National Alliance’s supportcommunity on Inspire. Thanks to that community, I joined theAlliance’s Advocate Leaders program. I’m so proud to speak upfor our community in Washington, DC, and around the country. I’ve traveled to DC twice for meetings in my legislators’ officesand plan to visit again in March. I’m also in the process ofestablishing a Survivors Teaching Students chapter in Louisianawhereby ovarian cancer survivors share their stories with medicalschool and nursing students to address the misdiagnosis or delayin diagnosis that occurs far too often with ovarian cancer andmakes it such a deadly disease.

There is so much still unknown about ovarian cancer – especially rare types like GCT that strikeonly .5 women in 100,000. There is no screening tool. A pap smear cannot detect it. The mostreliable measure is a test called CA-125, but it can be inaccurate and is rarely a marker for GCT. In most cases, GCT isn’t diagnosed until the pathology report comes back a week or more aftersurgery, and that’s what happened in my case. This creates the need for a second stagingsurgery. Despite lifestyle changes such as retirement from a stressful job, the elimination of allsweets and diet sodas, and the adoption of a mainly vegetarian diet, my cancer recurred in just twoyears. I had my third surgery in late July. The research says that GCT is rarely responsive tochemotherapy, so it was a hard decision for me. I had molecular profiling and chemo-sensitivitytesting that revealed the absence of a major tumor suppressor gene. The testing also revealedthat Taxol might be an effective drug for me, so I recently began chemotherapy. As difficult it is tohave any cancer, it’s especially difficult to be diagnosed with one that so little is known about. Itcan be very aggressive in some woman but much less so in others, and the data regardingprognostic factors is often conflicting. If my chemotherapy fails, I hope to join a clinical trial forimmunotherapy, as I believe that clinical trials are the route to take.


I have also joined forces with the Granulosa Cell Tumour Foundation of New Zealand, which wasestablished by a beautiful woman named Sladjana (Sofi) Crosley who fought GCT for many yearsbefore succumbing to the disease in 2009. Her widower, Powel Crosley, has vowed to carry onher research and has enrolled in medical school in Alberta, Canada at age 60. Due to the rarity ofthe disease, there is no GCT research being done in the United States so Powel’s efforts are soappreciated by a group of us called the GCT Survivor Sisters. We are 200 strong and live all overthe world, but we are united in our hope for a cure for GCT. Any profits generated will be sent tothe Granulosa Cell Tumour Foundation of New Zealand to help Powel carry on his research. He isnot yet aware of this effort because I want to surprise him, but Sladjana’s daughter Sofia is and sheis very touched. You can learn more about Sladjana and GCT by visiting the website atwww.gctf.org.nz/
Thank you and God bless each and every one of you. 

Terri