Hello

I am an avid reader of this discussion board but have not posted until now.

Last week I had the great privilege of attending the Foundation’s annual meeting. I met many wonderful people and learned a great deal. Prior to this, I had not met anyone with cholangiocarcinoma.

My own story is that I was diagnosed in fall 2015 with intrahepatic cholangiocarcinoma, at age 58. No symptoms – I had gone to see my GP doctor because I had pulled a muscle carrying boxes. A 9 cm. mass was seen on one of the scans.

I had a resection at Johns Hopkins followed by chemotherapy (gemcitabine + capecitabine), then radiation (with capecitabine). The adjuvant treatment was recommended because although I had clean margins, they were slim in one area, and there was vascular invasion noted in the pathology report.

Fifteen months out from surgery, I am thankfully NED so far. I have a monthly CA 19-9 and a quarterly CT scan.

If there is a lesson in my story, it is one already noted by many on this board – namely consult early with surgeons, particularly if the cancer is confined to the liver. In my own case, my (single) tumor was large and straddled the left and right lobes. My surgery was a “central hepatectomy” which means the center of my liver was removed. This is a less common form of resection that not all surgeons perform. I was originally told I was inoperable.

The postings by patients and caregivers on this board are immensely helpful, and I greatly appreciate the efforts by the Foundation to bring us all together and to advocate on our behalf.