My name is Jennifer and my father was diagnosed with cholangiocarcinoma about three weeks ago. Of course my family is devastated. He had gone to the dr because he was losing weight/muscle mass, decreased appetite, itchy skin, jaundice skin/eyes, etc. He was diagnosed by CT scan and biopsy. At first they said it was liver cancer, then something else, then finally they told us it was cholangiocarcinoma. We've been having a really hard time getting information from the doctors because they seem to never be available, etc. After he saw his oncologist the day after he was diagnosed, he was admitted to our local hospital. He was put on IV fluids, antibiotics, etc. He also had two blood transfusions due to low hemoglobin. After his doctors all reviewed the CT they said it was affecting 2/3 of his liver and appears to be in his lymph nodes. He had a procedure while he was hospitalized to put a stent in to drain the bile. He was sent home after several days in anticipation to go to MUSC to see a specialist there. Long story short, he has an appointment on 3/23 to see a medical oncologist.
Also, he is getting very jaundice again, still has decreased appetite, lack of energy, shortness of breath, and swollen ankles. I know this is a lot of information, but I just wanted to get advice/feelings on my situation and see what other people's experiences are with disease at this stage. I have no idea what to expect and the doctors have not really told us much either. I'm hoping that our appointment next week will shed more light on things.