Specialists/Into

Hi,

I am a 68 year old woman diagnosed with cholangiocarcinoma October 2009 and received a resection of the right lobe of my liver at Johns Hopkins. The tumor was very large but had not spread to the lymph nodes and was not detectable anywhere else. The margins were deemed clear. There was some question of the pathology being unclear but it was decided to go with cholangiocarcinoma. I received 6 months of gencime and so far all my markers are normal. I received treatment from a local oncologist. Except for the cancer, my health has been excellent.

As an aside my sister died at age 46 over 20 years ago of either pancreatic cancer or cholangiocarcinoma (diagnosis unclear). I am concerned that my young adult children could inherit this disease.

I had a bad experience at Hopkins with an oncologist who told me that I had pancreatic cancer and had obviously not read my reports or talked to the surgeon or pathologist. He rescinded his diagnosis after doing his homework. Needless to say I don’t have any faith in that particular individual. I do not feel like I am receiving really straight answers and am looking for someone to be absolutely honest and clear with me.

I thank you for your suggestions of cancer centers but am also looking for the name of a specific oncologist at each of the sites mentioned especially at Sloan Kettering which would be the most convenient given that I live in the DC/ Maryland area.

I feel blessed to have found this group and hope that I can also be of help to any of you once I get my feet on the ground.

Judy

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