Going through testing

The type of surgery they choose to do depends on the tumor location in the bile ducts.

If the tumor is in the bottom third of the bile ducts (close to pancreas and duodenum), they do Whipple.

If the tumor is in the upper third of the bile ducts (close to liver), they resect the bile ducts and part of the liver. This is different from Whipple.

If the tumor is in the middle third, they have an option to resect just the bile ducts. This is a much smaller surgery than Whipple. As far as I know, it’s not very common. Smaller resection may be inadequate from oncology point of view, if the tumor proves to be cancerous on the final pathology report.

I found this paper very useful when my wife was going through diagnosis:

Surgical strategy for bile duct cancer: Advances and current limitations
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/

Flyboy, take a look at this discussion:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8163

The situation is somewhat similar to yours. All tests are negative, yet the size of the stricture has increased.

Hi Flyboy,

We discussed exploratory surgery with my wife’s surgeon. He dismissed the idea.

If I recall his comments correctly:

1. If the tumor sits inside the bile duct, the surgeon cannot access it. Cutting the duct is not an option during exploratory surgery.

2. If the tumor is visible outside the bile duct, the surgeon cannot reliably distinguish benign from malignant by simply eyeballing the tumor.

3. They can’t do a full biopsy exam in the middle of an exploratory surgery. What they can do is called “frozen section” biopsy. The surgeon obtains a small sample of the tissue. The pathologist freezes the sample and takes a very thin slice (a few microns). Frozen section biopsy is not 100% reliable.

We agreed to do Whipple without a firm diagnosis. The firm CC diagnosis was established by the full pathology exam after the surgery.

Hi There:
I would suggest Jason Sicklick, MD at UCSD in San Diego. He is from Johns Hopkins and Sloan Kettering. Am sure he will answer a call or E-mail: (858) 822-3967 and http://www.jsicklick@ucsd.edu
Good luck! Talk to him first—

Hi,

Since you have Gilberrt’s disease;bilirubin(so does the jaundice) will go up or down depending on factors like infection,inflammation;stress level among others. I suspect you may have an infection(ie: like having a cold) prior to or during that period where your bilirubin went way up.

If CA19-9 is normal and the Cat scans are clean as what the report you had mentioned above, I don’t think you have any problem with regard to cholangiocarcinoma(CCA) at this point.Please remember,I am not a doctor and I could be wrong,I am just,like you, a patient.

But as you know,CCA in the common bile duct or the extra-hepatic ducts (the stricture) require expert or GI specialist who FAMILIAR with this disease to make the call;that is why a 2nd opinion like at UC San Fran is important before you choose to have the Whipple prodedure done.

My suggestion is :
when you do the next ERCP;ask the doctor to order a CEA lab test for you along with CA19-9 in a month or so; and a PET Scan of” the chest,abdomen and pelvis” too .
Get a 2nd opinion before any big surgery like the Whipple .
In that way you will get a complete picture of your health status.
God bless.

Wow, that is a lot of Whipples. Teddy’s CC was contained in the Bile Duct Valve where it connects to the Pancreas. He had a successful Whipple with clean margins. His liver was never involved. When it returned it appeared where the Duodenum used to be. I guess you will just have to sit tight until the Docs make their decision. It’s the worst part of all this, the mental strain. Please know that attitude plays a big part in treatment of anything and it sounds like you are ready to put the boxing gloves on. We used to say, “OK! Now we know what it is. Let’s take care of it”.