Topic: Have you ever heard of this...

Hi. My family and I are really confused.  My mother had brushings done at one hospital that came out cancerous and then she was sent to a medical university for further evaluation.  They did more tests and their brushings came out with abnormal cells, but not cancer.  We are going on 5 weeks now without a correct diagnosis because the medical univ. has now requested the slides from the first hosptial to compare and evaluate.  I spoke to the doc yesterday and he says if it is cancer, she would not be a candidate for surgery because they could not locate an exact tumor(apparently they looked and looked and could not find a tumor during the tests she had gone through) and they would not know where to operate.  He said that they would not want to remove part of her liver and have it be the wrong part, leaving the cancer behind. They spoke about chemotherapy as possibly the only choice for her. She has dialated intrahepatic ducts and one stricture which is now stented.  I am so confused and this does not make any sense to me.  Have you heard of this before?  Can anyone steer me in the right direction? My poor mom is getting sicker by the day.  Thanks to all of you.
Sue

Re: Have you ever heard of this...

Susan.....has anyone tested the CA19-9? Brushing have always been inconclusive for my husband therefore, all findings were combined in order to reach a diagnoses.  This cancer is difficult to determine due to the varied symptoms it can produce.  You might also want to consider sending the doctors reports, slides, blood tests, etc. to another facility familiar with Cholangiocarcinoma.  Where are you located?

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: Have you ever heard of this...

Hi, Marions. My mom in located in South Carolina and I am in PA.  Her CA 19 9 level was 149.  She had a PET scan which showed hypermetabolic activity in the upper part of the liver, but the first brushings were not taken in that place...very confusing. That is another reason why they don't think they can do surgery-they are not sure where the cancer is coming from.  I was thinking of sending info to Mayo and Johns Hopkins.  Do you have any suggestions?  Thanks so much.
Susan

Re: Have you ever heard of this...

Susan,

How far from Charlotte? You may want to check out Dr. David Iannitti.

Jan

Re: Have you ever heard of this...

Susan...M.D. Anderson sees quite a few CC patients.  Also, I wanted to share with you that it took a few weeks for my family to receive the diagnoses of CC from the many physicians we had contacted but, it was reassuring to know that everyone was in agreement.
Others may have some more suggestions coming your way. Hopefully, within the next 2 weeks the University Hospital will have some answers, also.
I am sending my best wishes your way,
Hugs
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: Have you ever heard of this...

Susan, please please please send the information and records to someone with experience with CC. I had a tumor that did not show up anywhere and my brushings came back negative, but original surgeon had a "feeling" that I had cc given my bloodwork and symptoms. When they opened me up, they found a pea sized tumor. I have had a reoccurance, again not indictated in the bloodwork or scans. It was invisible on all levels, except that I constantly threw up. When I was opened up again, they found a tumor the size of a flat grapefruit.  You need to talk to people who understand this cancer, not just cancer in general.

I am originally from SC and I went to UNC for a consult when I went home a year ago. We liked them. Duke is also close as is Wake Forrest and other people here have had good experiences with them.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Have you ever heard of this...

First, a send you good thoughts, as others have done for me....

I've been there, from 'abnormal' cells, to 'low grade' dysplasia to 'slow biology' cancer cells, to 'in situ' cells. After all the run around on definitions there is one bottom line, the cells being brushed are not healthy and are turning cancerous. First in small clumps and later they spread and some doc finally gets up the nerve to tell you you have cancer. Some tell you yes, some say no, but really when it comes down to it, you've got cancer, just a early early phase of it. Sorry for the blunt response, but as I said I've been through all this over the past 2 years and have suffered psychologically each time I got different responses until I just got use to the fact they were all dancing around their definitions of cancer.

Re: Have you ever heard of this...

Susan,

This article may helpful:

http://www.wjgnet.com/1007-9327/15/1353.asp

I am not a real expert on cc but perhaps the Spyglass would help diagnose your mom once and for all.

Patty