Making the Most of Life Despite Having Stage 4 Cholangiocarcinoma

After being diagnosed with cholangiocarcinoma, Eden stayed connected with loved ones via online games and video chat.

In June 2023, after a month of testing and scans, it was made official that my diagnosis is stage 4 intrahepatic cholangiocarcinoma, a form of biliary tract cancer (BTC). It is a rare and aggressive form of cancer in my bile duct that is in my liver and which has spread outside of my liver. Prognosis is typically poor even with early diagnosis.

That is when my entire world crumbled. Needless to say, it was a turning point in my life. I have always prioritized my health, and made healthy choices and exercising part of my everyday routine. So, the diagnosis came as a shock. I experienced no symptoms at all. Not having any symptoms is not unique to me.

Cholangiocarcinoma is often present without any clear symptoms in its earlier stages and difficult to detect. As a result, most cases are diagnosed at an advanced stage, when the disease is more difficult to treat. When I felt a lump in my left shoulder, I knew I needed to make time to have it looked at. I knew right away that was something wrong. Cancer had already metastasized (spread) to my neck.

Once I came to terms with my diagnosis, I told myself that cancer does not discriminate. It can hit anyone, anytime, anywhere. I once read that, “Cancer is just a word, not a sentence.” This statement resonated in me, and I told myself that I am not held prisoner by this disease. I can do anything within my power. I cannot control what is in me or around me, but I can control the way I respond to those. And so, my journey began.

As a former college professor, I understand that knowledge is power, and so I began my research. I did my homework. Through the power of the internet, I learned all about this cancer, all possible treatment options, possible side effects, fatal and non-fatal. It is also where I discovered the Cholangiocarcinoma Foundation, where I was given a mentor and started participating in a monthly online support group. I also got second opinions from a couple of health care professionals. I searched for clinical trials but there were none to be found. In a consultation with my doctor, I committed to a plan and a treatment regimen of chemotherapy and immunotherapy.

During all these treatments, I stayed connected with my daughter with regular online games. My husband had been by my side throughout the treatment, encouraging and supporting me. I continued to immerse myself in my community, remaining active by exercising daily and participating in a senior Zumba class. I chatted with friends and relatives over Zoom and, when I was able, joined them for lunch. I got connected with a community who understood what I was going through. Having people who listened to me and shared my journey kept me grounded, and in turn, I shared my positive attitude and outlook in life. In the winter, my husband and I went snow shoeing. I also enjoy downhill skiing and, most al all, lots of traveling when my treatment schedule allowed it.

I am now in targeted therapy after a failed six months of chemo and immunotherapy, and after four sessions of immunotherapy alone. If I had known that abandoning chemo and immunotherapy would result in cancer progression and its spread, I would have opted for the continuation of the regimen despite its side effects. The most noticeable effects from the treatment have been nausea and loss of appetite. I am back to “square one” and like the last six months never happened. I am coming to my one-year anniversary this month. For what I have, there is no cure. I will never be able to say, “I am cancer-free”. And I am OK with that.

I am now embarking on a new chapter of my life. I don’ know where this will lead me and where this new adventure is taking me. This is what life has given me, and I plan to make the most of it. Time will tell.

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