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 don’t listen to what you need (certain blood tests to pick up if you are having a recurrence), no support, and just being fobbed off as they have no idea how to treat you or what to do. The cost is ongoing — three monthly blood tests $181 with no rebate out of pocket expenses of CT, ultra scans, and PET scans. With my kind of cancer it is ongoing forever; three monthly blood tests, ongoing CT scans and ultra scans. No information or research on new presenting symptoms that occur after your surgery — that gynecologist or oncologist don’t know why you are having these symptoms — and just not knowing what comes next and where to turn to, except Facebook groups for questions and maybe answers. What is happening to your body changes. The biggest fear is leaving my kids and family behind with no cure and no research.
Where have you found community?
How do you feel both a part of and apart from the greater ovarian cancer community?
ROC INC on Facebook has been my godsend. When I was diagnosed I got no answers so I researched and came across Tash Armour from ROC INC. She is amazing. I have joined her committee and if I have things happening she asks her colleagues and has answers — but not all the answers — but she is amazing.
What gives you hope?
I keep myself positive, that’s about all you can do. If you let it consume you it will. I cry every three months when I go for my blood tests and scans. It’s the unknown, and if it does come back, what’s next? No one can give you answers. It is a scary world to be in with rare cancers.
What do you want to shout from the rooftops?
May God please give all the warriors out there hope, and please find a cure!
#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.