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 molecular 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 molecular 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 molecular 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 molecular profiling done, I would say as soon as possible upon the first biopsy.