Retiform Sertoli-Leydig Cell Ovarian Cancer | Janice’s #RareAware Story

Janice Rare Aware

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 have you found community?

When I was going through it, my community was AOL, then America Online, message boards. 1997. 

How do you feel both a part of and apart from the greater ovarian cancer community?

My cell type stats made it more deadly than common epithelial, but with only a dozen identified a year, at places as big as Roswell, we seemed like luckier ones. “Less” of us dying.

What gives you hope?

My hope came from my surgeon and Gilda Radner’s doctor (Piver) at Roswell, who said I was young, strong and healthy going in. Someone beats cancer every day. You must believe you can.

What do you want to shout from the rooftops?

Shout out to all the people you love to listen to your body. Be your own advocate. I went undiagnosed for years.

#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.

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