Hey, I probably have CC. Great to have this board.

[pcl1029]

Hi,
I agree with Lainy to seek a 2nd opinion for your case.

“there is one branch of the bile duct in the liver that just disappears for a short space in one scan slice.”-to me that means you have a bile duct stricture on that spot .It may or may not be a tumor but the chance is high because of the”biopsied swollen lymph nodes and found Adenocarcinoma cells.”you mentioned.
“my history of Ulcerative Colitis”-this is a common disease factor that associated with cholangiocarcinoma development like PSC and is especially in the younger age group between 30-50 years old.

May I ask how old are you?
Did you know how big is your leison?left or right side of the liver ? and is it near any major blood vessels(portal vein or artery)?
Where is the affected lymph node located?
Have you already have CAT Scan or PET scan in addition to the MRI with contrast ?

In general ,tumor growth doubles its size in 2-3months,some are slower and some are faster;normally CC is a slow growing tumor;but if I were you,(BTW,I am not a doctor,I am a CC patient also.) I will seek a 2nd opinion in Mayo clinics in Minnesota for it’s NO.1 ranking in GI cancers;or go to MD Anderson for it’s reputation of NO.1 ranking in oncology ;or go to John Hopkins for it’s No. 1 ranking in the past 20 years the best overall hospital care in the States.
To wait 2 more month seems ,for me as a patient, is a long time of uncertainty that will drain my energy and hope,not to mention the change of the size of the leison in the liver if it may be CC.

Finally ,I did read your comment about your doctor.it sounds impressive. but the BEST choice of where to seek the best treatment ultimately is on your shoulder ALONE. We,members on this board,by God’s design,can only suggest base on the best that we know how to help a fellow man or woman ,whether we are patients or caregivers and nothing else.
God bless.

[mustangmort]

This is who my doctor is. Yes, he has lots of experience.

Sean Mulvihill, MD, is senior director of clinical affairs at Huntsman Cancer Institute and professor and chair of the Department of Surgery at the University of Utah School of Medicine. He is a member of the Gastrointestinal Cancers Program. He holds the Ross Anderson, MD, Presidential Endowed Chair in Surgery.

Mulvihill

[lainy]

Hello Mustangmort and welcome to our wonderful family where you will find the most courageous and caring people in the world. When Doctors are stumped we strongly advise a 2nd and even 3rd opinion. Some Cancer Centers have not treated CC much and one is best off going to larger hospitals like Mayo and MD Anderson. You can also send your test results and LABS to these various hospitals that have a lot of experience with CC and see what they say. Are they talking about a Whipple surgery and if so why are they waiting 2 months? I hate to sound negative here but something doesn’t sound right to me. I think it would be good for you to find out if they have treated many CC patients before you.

[mustangmort]

Yesterday, after many tests, all kinds of scans, esophogeal ultrasound, etc, I’m told I “probably” have intrahepatic CC. It has had them stumped because the liver scans (MRI with contrast for liver) does not show a defined tumor, just a lesion area. He said, however, there is one branch of the bile duct in the liver that just disappears for a short space in one scan slice. He thinks that is probably a small tumor. And given my history of Ulcerative Colitis (had my colon removed 17 yrs ago) and a cholecystectomy 4 or 5 yrs ago, he is betting on Choangiocarcinoma. Also, during the ultrasound, they biopsied swollen lymph nodes and found Adenocarcinoma cells. So, here I am. The surgeon thinks I should undergo 2 months of chemo before he does surgery. He is sending me to the chemo oncologist to get his opinion.

What think ye?

[Author]

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