Low Grade Serous Ovarian Cancer | Ingrid’s #RareAware Story
Ingrid lives in Denver, Colorado, and was diagnosed with low grade serous ovarian cancer in 2019.
What has been your frustration in having a rare form of ovarian cancer?
I was diagnosed in January of 2019 with low grade serous ovarian cancer. My doctor said she had to look on Facebook to learn about this and how to treat it. At the time, there was also not much online about it, except for the some new research out of MD Anderson. I had a hard time finding a doctor who had patients with it. I also wanted to use my molecular testing as a guide for treatment and it wasn’t used, and I ultimately took a treatment I shouldn’t have. Fast forward to today. I am deep into the molecular profile of my ovarian cancer and am using precision medicine to guide my treatment. I additionally have more treatment options available because we know I have a KRAS mutation. The greatest frustration is that the science is moving too slowly. We need to expedite treatments and use precision medicine for everyone. The standard of care is a model of the average. I haven’t met a women with the “same” cancer yet. This is more complex than that. I am also frustrated that we have to fundraise for research and then fundraise to pay for the treatments we fundraised to start.
Where have you found community?
I found the Low Grade Serous Community on Social Media.
How do you feel both a part of and apart from the greater ovarian cancer community?
I feel a part of the ovarian cancer community because I have learned and participated in so many different activities related to fundraising, speaking, and meeting people with it. I am aware of my mortality and know that I will be part of the teal wings too. However, I feel apart from it because I feel great and my friends do not. I feel apart from it because I have been able to access testing that the “average” women hasn’t. I feel apart from it because my treatment path has been very different.
What gives you hope?
Genetics, precision medicine, and women doctors. My daughters and the daughters of all the other women who have died from this.
What do you want to shout from the rooftops?
Push the limits. Ask questions and find a doctor that listens to you! Demand advanced science!
#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.