Small Cell Carcinoma of the Ovary, Hypercalcemic Type | Anne’s #RareAware Story

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 was unable to receive treatment locally in Philadelphia and had to travel and live in Cincinnati for 9 months! It’s extremely frustrating being away from my family and friends. There were months where I didn’t see my kids.

Where have you found community?

Other than my family and close friends, my community is a Facebook support group, Small Cell Ovarian Cancer Support Community. I have met some of my closest friends through this group. When I couldn’t find a doctor in the Philadelphia area, they pointed me in the right direction and recommended Dr. Pressey in Cincinnati. If it wasn’t for them, I wouldn’t be here today! Other organizations that supported me are The HEADStrong Foundation, Girls Night Out Media and The DELCO Group.

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

Being a teal sister makes me feel like I’m a part of a community of women fighting for the same cause. However, being my diagnosis is rare, everything from my treatment plan to survival rate is lower. When you hear those words, “ovarian cancer,” it’s like a punch to the gut, then finding out it’s a rare form called SCCOHT it feels like the odds are stacked against you even more.

What gives you hope?

I always had the support of my family. My boys, Mikey (9) and Tommy (7) are the reason I fought for my life. My husband was my rock and my parents never left my side. All Survivors of Cancer give me hope!

What do you want to shout from the rooftops?

Trust your gut! You know your body best. Speak up when things just don’t feel right.

#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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