Topic: Brand new Diagnosis

Hi. My dear, dear cousin was just last night diagnosed with this disease that I am not even sure we understand what it is.  She started with a very annoying itch all over her body.  She has no rash or skin emulsions but is disturbingly itchy.  Her doctor recommended she go to the emergency room for faster lab results and of course they admitted her once they realized how jaundiced she is.  She had a CT scan and that determined a blockage.  Next they did a scope of some kind but were unable to get the "wire" through to relieve some of the backed up bile, nor could they get any scrapings for any pathology.  They determined that the characteristics of the blockage and all her symptoms lead them straight to the conclusion that she has Cholangiocarsinoma.  Today they tried and were unable to get a tube to the site of the tumor to drain some of this bile which, of course, is only to eliminate the symptoms.  She is now waiting transfer to Emory University Hospital from Emory Eastside, which is a small satelite location.  Once they get her to Emory, they are planning to do a Whipple, scary stuff from what we can gather by Googling.  Does anyone have anything positive to offer about this apparently very rare and scary disease and the procedures?  Is it classified as liver, pancreas, or bile duct cancer?  It seems they will remove parts of all of these organs including a portion of her stomach.  What does all this mean for her?  We are all trying to stay positive,but are obviously scared and ignorant to these facts.

Re: Brand new Diagnosis

I have not heard of a whipple being used for CC.  That is usually used for cancer of the pancreas.  I think if you search "whipple" on this site there was a link once to the actual surgery that you can watch.  I think I would get a second opinion if I were you. 
Patrice

Re: Brand new Diagnosis

The Whipple procedure is used in the treatment of cc where the tumour is at the bottom half of the bile duct.

This link should give you more information:

http://www.surgery.usc.edu/divisions/tu … inoma.html

Ron

Re: Brand new Diagnosis

Hi - So sorry to hear of your cousin, but I know from reading this board that many people have Whipple procedures and they are the ones that seem to have the most positive outcomes. CC is technically bile duct cancer, but there are many bile ducts, both inside and outside the liver, and the whipple is done when they are outside the liver, I believe. As someone else said, do a search for "whipple" and I"m sure you'll see some stories that will set your mind at ease somewhat - there's always a fighting chance, so don't get alarmed by the statistics. Best of luck to you and your cousin!
-Joyce

Re: Brand new Diagnosis

my mum underwent a whipples operation in july of last year. she had been having pains in her side but did not get it checked out. when she became jaundiced we went to the hospital. initially they thought it was gall stones but we later found it was not. mum had part of her pancrease, duodenum, bile duct, intestines and stomach removed. after the op she had LOADS of tubes coming out of her. She was in the high dependency unit for the first night and then moved back to the ward. she has no memory really of the initial days after the op. she was given a morphine pump to stop any pain which worked a treat.
within the first couple of days she was able to walk a few steps a couple of times a day....with assistance. gradually the tubes were removed making it easier for her to move around.
mum was out of hospital within 2 weeks of the op. analysis of the material removed showed that some cells still remained in the margins and that a 2 or 3 lymph nodes were also affected. we had hoped that they would get it all.
a few weeks later mum started on a combination of gemzar and xeloda. luckily for her she has had hardly any side effects, other than tiredness the day after chemo. she will be finished this course of chemo in april. she was due to do chemo for 6 months but unfortunately missed a few sessions as her blood count was low.
within the first 2 months after the op mum was back in work, although she had reduced the number of days she did. she has lost a couple of stones in weight but she had been overweight before the operation. she is in great spirits and has the most positive outlook on things.
after the initial shock at the news, being irish..... and unable to take anything seriously we pretty much tackled it like we tackle everything..... by always looking on the bright side of things and trying to see a  funny side whenever possible. we even had a 'do not feed the animals' sign over her bed whenever she was fasting for scans etc. in the hospital.
i hope this info is of some use to you and i hope everything works out well. and although it might seem clich