Thank you for joining the board and so happy you got to the conference. My Mom is NED thanks to radiation treatment at UMD, but if it returns, we’ll be heading to JHU for a second opinion (we’re in Bel Air). Very interesting on your surgery- our approach was to kill the left lobe (and the tumor) with radiation since she wasn’t resectable.
We look forward to hearing more milestones in your continued success !
Oh, fantastic Mary!!!! So good to hear from you. It was so wonderful meeting you and sharing meals with you! Don’t be a stranger now and visit us often and PLEASE keep me updated on how you are doing. Everybody, listen up, this is one of the sweetest ladies ever!
Dear Mary, First of all CONGRATULATIONS on your surgery, our favorite word. I too was at the conference and met a Mary from Maryland. Is that you?? It was so fabulous and awesome. Now that you jumped into the pool here don’t be a stranger and please keep us posted on how you are doing. You are a hero!
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.