Topic: Odd Presentation of CC

I'm brand new to this site. My mom was just diagnosed with cancer of the bile duct which was first suspected from some elevated liver enzymes. A CT showed multiple low density lesions "too many to count" throughout her entire liver. PET scan showed no evidence of cancer outside of the bile duct or liver.We were told by her oncologist that it was inoperable and will start her on Gemzar and cisplatin. I've been reading many messages throughout this website and havn't seen anyone else describe this kind of presentation. Her oncologist called it "odd".
Anyhow, to say the least this has been very stressful, devastating and confusing. We were hopeful when we heard there was no cancer outside the liver because I'd heard this ruled you out for a transplant, however, we were turned down by Mayo MN. The surgeon there (Dr Gores) said she was not  a candidate for liver transplant because the cancer was attacking so much of the liver that "it would just grow back". I'm confused and have yet to have someone explain it to me. If the diseased liver was taken out why should it matter how diseased it is??
My mom is only 49 and none of us are willing to accept chemo as her only option. We want surgery! We want a better outcome!
Can anyone help me understand this or give me some suggestions? Does anyone have experience/success with cc presenting this way?

Thanks so Much.
Nichole

Re: Odd Presentation of CC

Hi Nichole,
So sorry you have to go through all this - my mother's situation was identical to yours, but before I say anything, I must say this: Your mother is 49 and they should be trying EVERY aggressive means to cure her via resection or other means. Her youth is highly in her favor, and there are other options out there - so please get a second opinion - there are doctors who are willing to operate when others aren't.  There are some wonderful doctors that people on this board would recommend, if they knew what area you lived in. So don't give up hope!

As for the tumors inside the liver, that's called intrahepatic cholangiocarcinoma (cc). Bile ducts are located right outside the liver and there are numerous ducts INSIDE the liver, too. If the cancer is outside the liver in those bile ducts it's EXTRAhepatic. When it's inside the ducts in the liver, it's INTRAhepatic. They told my mother that she had "uncountable" tumors also - both lobes of the liver, nothing outside the liver. THey usually will not operate if both lobes are affected because they can't remove so much of the liver and if there are lots of tumors they can't possibly take them all out, and they're afraid that the cancer has spread elsewhere but it just can't be seen yet. I have heard that liver transplants aren't done at this stage usually - because they don't want to waste their precious livers on people whose disease will probably come back in the liver anyway. That's what happened to us, anyway - but you should try to find an oncologist/surgeon who is willing to take a chance on someone so young. I see you went to Mayo - you can try other places, like Memorial Sloan-Kettering in NY. 
I wish you and your mom the best of luck - there HAVE to be options for her, it's just a matter of finding the right doctor with the right attitude. Read JeffG's posts - he's been battling this thing for 8 years and he has a wonderful attitude.  All the best to you!!
-Joyce

Re: Odd Presentation of CC

Dear Nichole, I second everything Joyce said.  She is much more knowledgeable about all this than I.  We have only been dealing with cc and researching since end of May this year when my husband, age 52 diagnosed.  Our experience has been similar to yours. Your oncologist said "odd", ours was just blubbering nonsense.  I think most of the medical community knows nothing about cc or very little and are very quick to give the textbook standard 6 to 9 months and chemo only.  I understood the whole theory about not wanting to transplant more than Charlie's onc who kept asking my why a transplant wouldn't work.  Charlie was also turned down for transplant at Mayo and Univ. of PA. Sad but true what Joyce said about not wanting to waste a precious liver on someone who's going to have a reoccurrence anyway.  That does seem to be the general thinking. 

Charlie just had chemoembolization at UNC Hosp. in Chapel Hill, NC getting reading for liver resection in Nov., taking his whole left lobe out which is full of tumors too many to count.  There's a bit of tumor in the right also, but they think if they can get the biggest part with tumors out that they can manage the rest and hopefully give him some more time.  We just couldn't accept 6 to 9 months...like everyone on this site. 

Your Mom and Charlie's age are definitely in their favor.  Don't give up hope.  Get 2nd, 3rd, 4th opinions and keep fighting.  I think doctors are too quick to write cc patients off.  Also from our experience their overwhelming number of patients herding us in and out like cattle was not reassuring. 

Nichole, I know your frustration and wish blessings for you and your family.

Carol