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Sep. 30, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Voices of Rare Cancer 2020

Voices of Rare Cancer: Courtney’s Story

Posted by Valaree DonFrancesco

#RareCancerDay brings attention to the fact that without research funding, the only option for patients is to endure blanket therapy regimes that are designed for other types of cancers and, as a result, patients typically do not have high survival rates.

One of these types of rare cancers is fibrolamellar carcinoma (FLC), an aggressive liver cancer that strikes teens and young adults who are typically not diagnosed until the cancer is in an advanced stage. Fibrolamellar is a prime example of an overlooked, urgent rare cancer with no known effective systemic therapies.

Courtney, 27, from Glendale, Arizona, was diagnosed with fibrolamellar in 2014. She taped this video segment to tell her story of the treatments she has tried and her journey since her diagnosis in 2014 when she was only 21. Her story is an example of the difficulties in establishing treatment protocols for rare cancers, especially for this aggressive adolescent/young adult (AYA) liver cancer which primarily strikes 12-34-year olds who have so much life to look forward to.

While Sept 30 is #RareCancerDay, the next day, October 1st begins Liver Cancer Awareness Month. John Hopper, Rare Cancer Coalition Co-Chairman and President of the Fibrolamellar Cancer Foundation (FCF), said, “The FCF is hopeful that the increased attention at this time of year will help further interest from researchers- and funders- across the globe to collaborate and bring forth new innovative and effective curative treatments.”