Endoscopic tissue diagnosis of cholangiocarcinoma
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You may want to look FISH staining if this is not what you already had??
( not sure) . YOu can google it – my mother was positive for POLY cells vs. mono cells ( trisomy 7, I think). I know brushingscan be sent to the Mayo for FISH analysis because not all hospitals do this testing themselves. Also how is the CA 19-9 reading? Not sure if both types of cancer can be identified through these numbers. Unfortuantley CC is determined by a combination of tests, namely CA 19-9 ,FISH staining, brushings, in combo with a visible tumor. (although some CC is cellular with no tumor). Normally a needle biopsy is not done as it has been known to seed the cancer.Lastly, not sure where you are, but the Mayo has a branch in florida as well as Arizona and Minnesota. the application process you read was unfortunate but I think it may have applied to a patient from Canada? We called Minnesota , got an appt and were never asked for any $, period. I know others on this site have been in contact via email with doctors there but even it you can get an email address you still have to have a doc send the brushings.
So, I would think your doctor could contact MAYO and send out the brushings for FISH staining and this will help you narrow your diagnosis? I can understand your frustration – hang in there.
ashleyYes, to the cytology of CC. We will be surrounded by specialists at the symposium. I am hoping for both of us to receive a more conclusive answer.
See you on Friday,
MarionMarion,
Still wondering if there is a cytological test for tumor tissue for cholangio, specifically…
Given that she is Stage IV of one or two cancers (definitively not bone cancer), treatment options are very limited no matter what type of cancer is there.
But there may be different things out there to treat her with. Her local doc is pretty much a chemo deliverer, period. So we are looking for more opinions, hopefully without traveling for a visit first.
Who ARE the specialists in this cancer?? That is hard for me to discover.
My father and I will be at the CanLiv Conference on Friday. Hopefully,we will learn more about diagnosis and treatments for Stage IV, and maybe some of the docs there are experts…?
CanLiv Board-member Dr Sirica was very helpful to me over the phone in helping me understand there are even various sub-types of cholangio.
Dr El-Khoueiry of USC-Norris needs an appointment, as do the two MassGeneral docs on the board, Dr Xu and I forget the other name now.
I read the post about the Mayo Clinic application with dismay, but it is the same thing I have experienced. And closer to my Mom, Moffett in Tampa FL has seen lees than 10 cases in the last 10 years.
It is like a maze.Looking hard!!
Your Mom’s diagnosis has been a puzzle to me also. Now, that does not say much since I am not a physician and can only rely on my experience, the postings on this board, and the knowledge I have gained by attending conferences on behalf of the CC Foundation. My husband’s brushing and fine needle biopsies also had been inconclusive however, his scans and symptoms of the disease left very doubt about the diagnoses of CC. (It had later been confirmed by the surgeon who performed the resection.)
As far as I know a definitive diagnosis of CC hinges on obtaining evidence of malignancy from the biliary epithelium. I have also been told that the most common places for the metastases to occur are the lungs, liver, brain, and the bones although, I don’t recall anyone on this board ever mentioning metastases to the brain when diagnosed with CC.
I don’t recall in your postings whether you have consulted with several specialists re: your Mom’s diagnoses of CC but if not, then I would definitely consider it.
I am also making a mental note to ask some specialists in the field of CC. I can’t promise as to when I will have the opportunity to do so. The question then would be: how would the treatment differ?
Best wishes,
MarionThank you so much for this, Marion.
My mother had mostly inconclusive, ie unsuccessful brushings and fine needle biopsies.
What tissues were successfully obtained (FNA only worked) from the GB/liver area and the pelvic bone were then stained. The stains then showed adenocarcinoma. It appears that the docs are “guessing” that it is CC because of the location of the mass and the absence of any other tumors anywhere else except in the skeleton.
My question is: are there any cytological tests for cholangiocarcinoma specifically?
And can adenocarcinoma from any other organ spread to the bile ducts or gall bladder?
We are still a little unsure if the diagnosis id correct.
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