Knowing what I know now, I hope that molecular profiling becomes the norm immediately upon diagnosis.
My name is Abbey and I live in Wisconsin with my husband, Shane, and our two children, Elly and Jake. I work in the recruiting/talent acquisition field and enjoy volunteering for a variety of wonderful causes. Outside is our favorite place to be! We love biking, hiking, boating, and traveling. I am an only child and my mom, Libby, has always been my best friend. She's one of the most selfless, kindhearted people you could meet.
[I was] crushed when my mom received a cholangiocarcinoma stage 4 terminal diagnosis. We were in shock. Our initial meetings with doctors were grim, and unfortunately, not filled with a ton of great options.
We went into research mode and fortunately came across the Cholangiocarcinoma Foundation. One of the most valuable pieces of information I stumbled upon was about molecular profiling. This had not been discussed with us by our medical team, but when we brought it to their attention, we were able to get their support.
We worked with Foundation One who helped us with the cost and we had a tissue sample sent in for testing. The results of molecular profiling helped us to feel so much more empowered. It felt like we had a bit of a roadmap, some additional information that would help guide our difficult, scary, and confusing journey.
Knowing what I know now, I hope that molecular profiling becomes the norm immediately upon diagnosis. With this valuable knowledge, it gives patients a chance to pursue lifesaving therapies without wasting time on trial and error.
I'm so grateful that I found a community that helped to guide me and I hope we can educate more patients, caregivers, and doctors on the importance of molecular profiling.