Janice lives in NW Pennsylvania, and was diagnosed in 1997, at age 34, with stage II retiform sertoli-leydig cell ovarian cancer with mucinous heterologous elements. What has been your frustration in having a rare form of ovarian cancer? My frustration was getting my rare cell type identified correctly, then finding out the protocol was experimental. Where … Continued
Sally lives in Mechanicsville, VA, and was diagnosed with a granulosa cell tumor. What has been your frustration in having a rare form of ovarian cancer? The most frustrating thing for me is that there is no standard of care and very little research. So little is known about granulosa cell tumor that one of … Continued
Anne lives in Morton, PA, and was diagnosed with small cell carcinoma of the ovary, hypercalcemic type. What has been your frustration in having a rare form of ovarian cancer? My frustration with having a rare form of ovarian cancer is the lack of doctors with knowledge and/or experience in treating women with SCCOHT. I … Continued
Karien lives in Kingaroy, Queensland, Australia and was diagnosed with a granulosa cell tumor. What has been your frustration in having a rare form of ovarian cancer? No doctors or surgeons knowing of my diagnosis, no research into it. When I go to a hospital or doctor (I live rural) they just send you home and … Continued
Christine lives in Atlanta, GA, and was diagnosed with a granulosa cell tumor. What has been your frustration in having a rare form of ovarian cancer? OB who first found the mass thought it was benign and didn’t run bloodwork that would have caught the GCT tumor prior to surgery, during which she cut the … Continued
Fortuna lives in Naples, Italy, and has adult granulosa cell cancer. What has been your frustration in having a rare form of ovarian cancer? My frustrations were, and are, that there is not a lot of information available about my cancer, and even if you try to share your story with other people with ovarian … Continued
As our community continues to come together to make strides against ovarian cancer, we want to give a shout-out to our many OCRA Heroes who push themselves physically, creatively or in myriad other ways to raise money for research. We’ll be introducing you to many of them in the months to come. First up are … Continued
Researchers from the University of Kansas School of Medicine conducted a study to capture the value and experience of giving and receiving peer support in the face of a gynecologic cancer diagnosis by interviewing Woman to Woman Mentors and Mentees from a newly created program at the University of Kansas Medical Center. As the report states, many … Continued
Chris Turner is taking on the Sheep Mountain 50 Mile Ultra Marathon in loving memory of his mother, Carla, who passed away from ovarian cancer in 2018. His campaign will raise funds for OCRA’s programs to fight ovarian cancer through scientific research, advocacy, and patient support programs — so that one day, we can find … Continued
“It’s kind of like how the Apollo mission to the moon gave us Velcro.” Dr. David Chapel and his team are laying new groundwork in better understanding the origins of high-grade serous carcinoma, even if the exact applications are hard to see this early on. David, an OCRA grantee, speaks with great passion when he … Continued
Many people are surprised to learn that ovarian cancer is not one disease, but several distinct types and subtypes. Each type differs in who it typically affects, how it spreads, how it’s treated, and its prognosis. High grade serous ovarian cancer (HGSOC) is the most common, and is often the unspoken type we refer to … Continued
Those who have faced an ovarian or gynecologic cancer diagnosis have so much to offer to others going through a similar experience – be it support, tips or friendship. Inspired Advice is a blog series that tackles specific topics – from managing feelings of isolation to navigating a new diagnosis – and shares advice and reflections from our OCRA Inspire Online Community. … Continued
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