My name is Marisa, and I’m a nurse and a professor at a large university. As of June 2021, I also became a cholangiocarcinoma patient.

My journey started after meeting a friend for dinner at a restaurant. Later that night, at about one o’clock, I woke with terrible stomach pain, nausea, and vomiting. I was convinced I either had food poisoning or appendicitis. All of the pain was on my right lower side—typical of appendicitis. I waited a day, giving myself fluids, and the pain continued.

During my visit to the emergency room at my local community hospital, I read my own CT report on my portal. In addition to appendicitis, CT scans also discovered multiple tumors on all the lobes of my liver, as well as several enlarged lymph nodes. I remember thinking, “Is this somebody else’s report, or mine?” I was in a total state of shock.

At first, the physicians at the community hospital wanted to begin treatment for colon cancer and remove my appendix. However, not knowing what the source of the cancer was, I decided to go to my usual sources of healthcare at a large academic health center.

I contacted my nurse cancer experts there and was able to make an appointment with an oncologist.

They took some of the biopsy material of my tumor, and unbeknownst to me at the time, sent it out for biomarker testing. A few weeks went by and the test came back as cholangiocarcinoma—not colon cancer—as the source. Three days later, I started standard treatment with chemotherapy.

Following chemotherapy, we started looking for next steps based on the results of my biomarker testing. I started a trial of targeted radiation followed by immunotherapy. I had disease progression on the trial, and I am now back on a new chemotherapy regimen. Through biomarker testing of my cholangiocarcinoma, my doctor was able to identify several biomarkers of interest, including one that may help direct my care in the future.

If a person were to ask me when they should have biomarker testing done, I would say as soon as possible upon the first biopsy.

I’m 67 years old, and I’ve been married for 38 years. I’m a psychologist who worked in private practice, and I have two daughters who live across the country. I also have one grandson and another one on the way.

I started having symptoms in June of 2017. It almost felt like a gallbladder attack; the pain was intense, and then it was gone. I went to the emergency room, and following a CT scan and some lab work, they originally thought it was gastrointestinal. However, I knew I had a family history of liver disease and was being observed for cysts on my liver.

At first, CT scans didn’t show anything, which was frustrating. However, after about 10 or 11 months and additional testing, a tumor was discovered in my liver. Because of the tumor’s location in my liver, my oncologist decided to remove the whole tumor surgically rather than just taking a sample for a biopsy. After testing of a sample of the tumor, I was diagnosed with cholangiocarcinoma. I was shocked; I had convinced myself that it can’t be cancer.

When I was first diagnosed, I knew nothing about cholangiocarcinoma. I relied on my oncologist for a lot of information, and I tried doing some of my own research. It was hard; there was a lot of information to sift through, and some of it was really scary.

Fortunately, they had sent a sample of my tumor for biomarker testing. I learned a lot about biomarker testing from attending various conferences and webinars held by the Cholangiocarcinoma Foundation. The biomarker testing showed that my tumor had a type of mutation called an FGFR2 fusion. The information from biomarker testing has been an important part in helping to determine my care plan moving forward.

My advice to other people who have cholangiocarcinoma considering biomarker testing is that knowledge is power. Learning more about your cancer may cause some anxiety, but it can be really empowering too.

For most of my adult career, I was a teacher and administrator. During my last year at the school, I had open heart surgery, and I decided that I would retire at the end of the school year. My plan was to spend more time with my daughter, son-in-law, and grandchildren.

The week after I retired, I went to the ER for what I thought was a urinary tract infection. The ER doctor was suspicious that I had kidney stones. A CT scan revealed that I did have two kidney stones, and it also showed a lesion on my liver. I was referred for more imaging and then on to a GI specialist. He told me that I had hepatocellular carcinoma (HCC). I was stunned. A cancer diagnosis was the last thing I expected.

The first family member I told was my daughter, Abbey. We were both totally in shock. We told my sisters. One of them is a nurse and provided invaluable medical insights. We really did not know what to do next. The GI doctor had referred me to a university medical center to talk about a transplant. I was very afraid of that.

We all caught our breath and started to really look at the next step. We obtained opinions from three respected medical centers. After gathering the information from the doctors and tumor boards at these centers, we chose one. The treatment was a resection to remove the tumor. The surgery was successful and the margins were clear. The pathology showed that I had intrahepatic cholangiocarcinoma (iCCA), not HCC.

I was feeling vulnerable and alone. Our general research was still showing a poor prognosis for iCCA. About this time, my daughter found the Cholangiocarcinoma Foundation as well as three online patient communities. The Cholangiocarcinoma Foundation, as well as the members of these groups, gave us personal support, education, and hope.

Through the Cholangiocarcinoma Foundation and the group members, we learned about the importance of biomarker testing. None of the doctors we had worked with had ever mentioned this. This was done and the results showed several mutations.

Having the information from the biomarker testing is what my care plan is based on. I think that it is vital for patients to have access to this service. Knowing what abnormal genes or gene defects are present is valuable in developing a care plan. I discuss the importance of this with the patients I mentor and also with newly diagnosed patients.

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 biomarker testing. 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 FoundationOne, who helped us with the cost, and we had a tissue sample sent in for testing. The results of biomarker testing helped us to feel so much more empowered. It felt like we had a bit of a road map, some additional information that would help guide our difficult, scary, and confusing journey.

Knowing what I know now, I hope that biomarker testing becomes the norm immediately upon diagnosis. With this valuable knowledge, patients have 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 biomarker testing.