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 2 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 3 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 3 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 molecular profiling. 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 molecular profiling 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.