Topic: My identical twin and exactly what the hell diagnosis?

Some of you have seen my posts before.  My twin sister was diagnosed with ampullary/bile duct cancer in June and had the Whipple at duke in July.  She is doing better but I have been so confused by all of the reports:  first they say she has ampullary cancer and then bile duct cancer, and then now- they are wanting to put it under the category of pancreatic cancer.  I am just going to get a copy of the path report and find out myself.  I just want to know how to delineate the differences.  Any feedback?  thanks, heather

2 (edited by marions Thu, 01 Oct 2009 22:40:56)

Re: My identical twin and exactly what the hell diagnosis?

Heather....Does the report point to Distal bile duct cancer?  It is near the ampulla of vater and treated with a Whipple resection.  In this operation the first portion of the small intestine is removed, the head of the pancreas, the common bile duct and the gallbladder.  A Whipple procedure is the same operation as it is performed for cancers at the head of the pancreas.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My identical twin and exactly what the hell diagnosis?

Hi Heather,

Before my dad got the '"official" diagnosis of CC, the docs said it could be either pancreatic cancer or cholangiocarcinoma - interesting, they never used the phrase bile-duct.  Up here in the northwoods, the docs hadn't really experienced many cases of cholangiocarcinoma/bile duct cancer.   Further, while dad rehabbed at the nursing home, they charted him as having pancreatic cancer never changing it despite the doctors or myself attempting to correct it.  X-rays showed that while the liver, kidneys, etc were affected, his pancreas was in pretty good shape?!?!  Go figure!

I bumped into an aide that worked with dad at rehab, commenting on Patrick Swayze's passing of pancreatic cancer.  She mentioned how dad was the only person she knew of that had PC.  Oh well, other than pointing out the differences in an attempt to bring awareness, what can one do?

Even when dealing with insurances, other med agencies, etc...no one heard of cholangiocarcinoma, and it was difficult to obtain info or get services or get answers.  UGH!  Not until I found this site...thanks be to God and his angels at this foundation.

So, I wish you well on your search...be vigilant, and be strong!

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: My identical twin and exactly what the hell diagnosis?

Jolene, we had the same problem, the Doctors knew it was bile duct cancer every Dr we saw said it was cholangiocarcinoma...but Hospice would not call it that, they would only let it be called "gallbladder cancer". We tried over and over to correct them but they would not change it.

Another problem was that not enough Doctors knew enough about it. My mom was her Doctor's 2nd patient w bile duct cancer. She desperately needed doctors that knew what they were doing...she needed to leave the state.

Yes thanks be to God for this site! We need to get the word out there!

Blessings, Elicia