Pamela Connor lives in Liverpool, New York, and has a squamous cell carcinoma arising in a mature cystic teratoma.
What has been your frustration in having a rare form of ovarian cancer?
It’s difficult to get good information, either from my doctors or from other women who have had the same cancer. I also fear that there isn’t a lot of funding for the rare types of cancers since often times, the medical community is trying to help as many people as possible. There are so few of us with this cancer that looking from a cost perspective, it may not be worth it to them to try to find a cure for us.
Where have you found community?
Several places: I’m a member of 2 local cancer support groups, one for women who have/had or are caregivers to women who have (or who had) any Gyn cancer and the other for any women touched by any cancer. I also am in several OC Facebook groups. I’ve been a presenter for STS for 5 or 6 years now and I’m a new Woman to Woman mentor (I just had my first conversation with a match this evening). All of the above have been very helpful to me and have taught me so much through the years.
How do you feel both a part of and apart from the greater ovarian cancer community?
I feel like we’re a gigantic family. I love and admire all of my teal sisters. In that way I feel a part of the greater ovarian cancer community. The lack of being able to get a lot of information about my specific cancer makes me feel apart from the greater ovarian cancer community. I was thrilled and appreciated during the online conference last year to have some little nuggets about rare cancers but even then, it wasn’t much at all.
What gives you hope?
Seeing so many women thriving so many years after diagnosis. It’s truly inspiring.
What do you want to shout from the rooftops?
Pay attention to your body. You know yourself. If something doesn’t seem right, go see a doctor. Seek additional opinions if you think they’re necessary. And more specific to rare ovarian cancers, please don’t forget about us. Please keep trying to find a cure. You may think if there’s only a 2% (or lower) risk of something that it won’t happen to you…..but what if you’re that tiny percent?
#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.