Müllerian Clear Cell Carcinoma | April’s #RareAware Story
April lives in Federal Way, Washington, and was diagnosed with Müllerian clear cell carcinoma.
What has been your frustration in having a rare form of ovarian cancer?
My biggest frustration is finding effective treatments and battling my insurance company to approve treatments. My insurance continues to deny treatments like immunotherapy, calling it investigational because there are no proven studies to show effectiveness. If we use that line of thinking ALL treatment is truly investigational for my type of ovarian cancer since there is so little research. Yet they will approve all chemo drugs dispute the fact the my cancer is known and has proven to be resistant to chemo.
Where have you found community?
I am still searching……fortunately I have lots of people supporting me but have no connections to people who have the same pathology and fighting the same battle as I am.
How do you feel both a part of and apart from the greater ovarian cancer community?
I am a part of it from the standpoint that I have ovarian cancer. I am apart from it because only 3-5% of those with ovarian cancer have my specific type. The standard treatment has proven to be ineffective and so little research has been done to find something that is effective. I am searching for that needle in a haystack. Every type of treatment I go through we just have to cross our fingers and say a prayer hoping it works.
What gives you hope?
My faith.
What do you want to shout from the rooftops?
My life matters too! How can we give away millions of dollars to people for getting a Covid vaccine that is not FDA approved and with no history to prove how effective it is. While people like me cannot even get the possibly life saving treatments we need. How can we come up with the Covid vaccine so quickly yet still don’t do the research to find treatments for so many rare forms of cancer!
#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.