Topic: Possibility of misdiagnosis

Hi everyone - my dad came to Seattle to visit a hospital in the area and after two appointments and new CT scan the Drs think the cancer might be pancreatic as opposed to CC. We were very confused since the original biopsy was from the duct and the laparoscopy and previous CT's indicated no visible lesions to the pancreas. The explanation was not that convincing since the evidence was mostly from radiology and there was no biopsy or visible damage. The Dr. said my dad's back pain was mosy likely expressed from pancreatic cancer although he has had it for many years (over 20).

Does anyone know or have experiences with misdiagnosed CC. Since both are adenocarcinomas it is possible it could be the case but I would be very surprised since all indicated it was CC.

2 (edited by KathySue Fri, 16 Jun 2006 12:07:56)

Re: Possibility of misdiagnosis

I sent my fiance, Mark's, biopsy slides and path reports to John Hopkins for a 2nd opinion.  Just received their results back.   They state:

"The findings are consistent with a cholangiocarcinoma, however matastases should be excluded on clinical/radiologic grounds.  Possible sites of origin include upper GI tract (including pancreas) and lung."

So now we are confused too.  Is this a possible misdiagnoses? Waiting to hear back from Mark's oncologist regarding John Hopkins report.

His surgeon's nurse is saying because Mark's case is very rare (only small tumor inside the liver and not in the ducts), they are suggesting this might not be primary to the liver because it is rare for it to be where it is.  Also said Mark's surgeon "looked around" when he was inside, and the ERCP showed the pancreas to be fine, and they are certain it is Primary to the liver.

So very confused and frusterated with what to do.

KathySue
Waukesha, WI

Re: Possibility of misdiagnosis

From what i have been told it is sometimes hard to tell as they are so close to each other.  My cancer was in the bile duct but the surgeon could not be 100% sure until he sent my pancreas to the lab.  It turns out it was in the bile duct but their was that doubt in their mind

Re: Possibility of misdiagnosis

hi Kathy sue
My husbnd Jon also just has a tumour in his liver not in the bile ducts , this was confirmed on biopsy
Alison

Re: Possibility of misdiagnosis

My cancer diagnosis was confusing also. Initially they found a large ~8cm mass in my liver, appendix, and omentum.  The surgeons removed the appendix, right lobe of the liver, gall bladder, and a slab of th omentum.  The cells in the tumor were adenocarcinama.  The surgeons thought it was appendix cancer, except it wasn't on the inside of the appendix. So, we didn't know what kind of cancer I had. When I had a recurrence, we consulted the Mayo Cinic. They were the ones that suggested it was intrahepatic cholangiocarcinoma.

I just have the feeling that sometimes the doctors don't know for sure and they have to just make a best guess and treat base on that guess.

Re: Possibility of misdiagnosis

Mark's (my Mark) cancer was also in his liver and not the bile duct, we had to have a biopsy to be sure.

Stacie

Re: Possibility of misdiagnosis

Andy,

My husband was diagnosed with Stage 3 pancreatic cancer on November 13th. They said the cancer was in his bile duct, pancreas and one lymph node.  He had the Whipple on November 28th.  They removed his gallbladder, 2/3 of his pancreas, 5 cm. of his intestine, duodenum, 12 lymph nodes and common bile duct.  The pathology report came back bile duct cancer not pancreatic cancer.  His pathology report reads: Tumor location; wall of common bile duct.  The reports states that the tumor does not apprear to invade the common bile duct.  That the pancreas is sectioned to reveal a 2.5 X1.5 X1.5 cm white firm tumor.  Of course, our doctor expressed his concern to the pathologist as to how this could be bile duct and not pancreatic and the pathologist stuck with his findings that the cancer cells were bile duct.  Of course, we were told that you could get 10 pathologists into a room and that a few may think it is pancreatic.  That is why pancreatic cancer and bile duct cancer have sometimes been misdiagnosed. 

We are just hoping that the diagnosis of bile duct instead of pancreatic can give us more time for someone to find a cure!! 

Cathy