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 the preeminent doctors in the country for rare ovarian cancers states that you just have to keep trying different drugs until you find one that works.
Where have you found community?
I have found some amazing support groups. One is a Facebook group called GCT Survivor Sisters! This is my tribe and they are my people! The women in that group understand my specific disease and the frustrations that come with it. I am also part of a local survivor’s group. We are made up of women ranging in age from their 20’s to their 70’s. Some have been NED for years and others are fighting with their entire being. We have loved and lost. I was also lovingly wlecomed into a survivor’s group from another state that two of my GCT sisters are members of. I am able to attend their monthly meetings via Zoom. I decided many years ago that I’m not going through all this for nothing. OCRA has helped give me purpose. I’ve been attending annual conferences and making connections with other survivors from all over the world. I am an OCRA Advocate Leader and also a presenter with Survivors Teaching Students.
How do you feel both a part of and apart from the greater ovarian cancer community?
Having a rare ovarian cancer makes you feel like the red-headed step child. You know you belong but you don’t feel like you belong.
What gives you hope?
Research gives me hope. My gynecologic oncologist who never gives up on me gives me hope. He told me within my 1st year with him that you hear hoof beats and think horse, but that I am a zebra. My family gives me hope. My local community that never fails to rally around me and my family gives me hope.
What do you want to shout from the rooftops?
Ladies, listen to your bodies! Doctors, listen to your patients! Learn to be your own best advocate. Don’t stop asking questions and looking for answers. Find your joy in every day.
#RareAware is shining a spotlight on the thousands of patients across the United States who are living with a rare form of ovarian cancer — raising awareness, offering resources and information, and building community for those who may feel both a part *of* and apart *from* the larger conversation about ovarian cancer. Learn more about #RareAware and share your story.