Penny - Cholangiocarcinoma

[Guest guest]

Apparently cholangiocarcinoma can be hard to diagnose and per s Hopkins

the standard treatment of chemo/radiation isn't very successful. That's why

each of you who are more at risk then others need to be on top of all the

trials and their phases. Become educated so that should this happen you can

make a informed decision as to how your going to treat it.

Rapid loss of weight, upper shoulder discomfort, knot between your rib

cage....These are all signs, however some weight loss is to be expected with

this disease as well as the URQPain/discomfort. One very important thing to

be aware of is that the location and size of the tumor. There are procedures

that are available if you can catch it early. That's why you need to be on

top of all those medical procedures out there. We thought s Hopkins was

the place to be...WRONG if you have cholangiocarcinoma....you need to be

aware of those hospitals that deal and have dealt with this. Those with a

proven track record. Insist on routine blood test for cancer markers. Keep

you bilirubin down because a lot of the trials require this to be 2 and

below.

Doctors I don't believe would knowingly choose not to treat this carcinoma.

I've been told that if its origin is within the liver that you have some

time to treat it....otherwise it is fast growing.

I could go on and on...so I'll stop for now

Lynn