First steps in the battle against the disease. We need directions pls

No knowledge on chemo regiments....but please get a second opinion on the surgery.

Kris

I'd suggest contacting surgeons at some of the cancer centers listed on this site and talk to them via phone.   Some, perhaps all, will be willing to look at your Dad's records/labs and imaging and tell you if it's worth a trip over here.  As a side note you should begin the habit of always getting copies of all tests, results and imaging.

Since you're closer to the east coast of the US it may be simplest to concentrate there.  Some suggestions  I didn't see in your list would be Lahey Clinic in Burlington Mass and John Hopkins. 
You can use the search function on this site to find posts of others experience at different locations.
As CC is usually slow growing you probably have a little time to make informed decisions before choosing the treatments your Dad wants to try.
Best of luck and keep us  posted.

-Peter

My father had surgery for an abdominal aortic anueryism in late July.  It was during this surgery that a mass on his liver was discovered.  The lab work came back as CC.  We feel fortunate that his  CC was discovered earlier than usual.  He has not had any outward signs of CC.  The Doctor's did go in and removed the tumor on his liver and were successful in getting clean margins.  They did remove his gall bladder at the same time.  The oncologist, Dr. Mandanas, seems competent, but clearly admits that there is little data to go on as this cancer is very rare.  My father who is a very healthy 82 year old will be starting chemotherapy soon.  The Dr. have decided to use Gemzar which is a pyrimidine atagonist (antimetobolite) and they will be administering it intravenously through a port that has already been put in.  I have put him on some supplements, which the Dr. does not want him on during chemotherapy.  Unfortunately, the Dr. cannot tell me why he doesn't want him on them, just that they might interfer.  I wanted my dad to go to MD Anderson, Mayo clinic or CTCA, but they seem to be comfortable using this Dr.  Does anyone have any comments or concerns about this course of treatment?  I appreciate your time.

Stephanie

Thank you very much to all for the every useful advise. Once we have my dad's biopsy results I will contact other consultants for a second opinion (they all ask for a copy of the report which we don't have yet). I have also spoken with Dr Andrew Kennedy at the Wake Radiology Onchology department in NC under Wayne's advice and he told me that in his opinion the best first treatment for cholangiocarcinoma is a combination of: Extrenal beam radiation and chemotherapy (5-FU with Davanat) both for 5-6 weeks and both done at the same time. Has anybody experienced this particular treatment?

Thanks to you all and best wishes.

Thanks Mary. This gives us some hope. If you don't mind me asking, was your husband's Klatskin tumor unresectable too , what stage was it? My dad's apparently is stage 4 although the lymph glands don't seem to be affected yet. Sorry one more question is Xeloda the same as 5-FU? and finally where was your husband treated.

Apologies for the avalanche of questions. I guess not two individuals are the same but just want to get as much feedback as possible.

Thanks very much for everything.

Katia

Dear Mary,

Thank you so much for your prompt and so detailed reply. I am so happy that your husband's tumor is dead. There is no reason why it shouldn't stay like that. We will be thinking of him. We are currently considering the Anderson clinic in Madrid which is a branch of the Andersin clinic in Houston. We are trying to schedule an appointment. Fingers crossed they will have this treatment for him as the hospital where he is now doesn't. Just to let you know Dr Gregory Gores from the Mayo clinic also agrees with this combination (radiation beam therapy with the oral form of 5-FU) as the best option at this satge. Just a couple more questions (sorry for having so many questions) if that's OK. Did your husband have initial surgery like my dad to try to remove the tumor surgically? Did your husband have a stent put in like my dad is scheduled to have put in on Thursday? Is that stent compatible with the treatment? Finally, did your husband have the brachytherapy at the same centre?

Thanks again for all your precious help.

All the best.

Katia.

I Just wanted to say I remember my positive encounters with MD Anderson...it is definitely a place to start.  Although we ended up not going there, the patient intake coordinator communicated with us via email for a few weeks to get my husband an appointment and find the best dr to consult.  At that time my dh was diagnosed adenocarcinoma of unknown primary...it was in his liver but the biospy suggested cholangio.  He ended up having surgery after chemo did nothing for him...and a local surgeon reviewed his case and was willing to give it a try and removed tumor which was in liver but then he typed it as cholangio.  Very strange turn of events...definitely investigate and have hope at this point...something so deep within the body, it is hard to know at first which is the best approach.

Dear all,

Thank you so much for all your replies and information. Sorry I haven't been in contact lately but was in Spain with my dad and it was all a bit busy with no easy access to the internet. My dad has had the stent put in in hospital but I was a bit upset when they told us that the only one they could do was a pemanent metal one. They didn't know of any other methodologies. Dear Mary, is your husband's stent made of plastic or metal? What happens if my dad's clogs? We are now starting the process of going with the Anderson clinic to start the radio and chemio treatment and will let you know all of the progress. We keep our fingers crossed. I am just a bit worried that a month has gone by since the operation and he hasn't started the treatment yet. How fast does this thing grow? Dear Mary, it sounds like your husband's operation was very efficient. Unfortunately, both of my dad's bile ducts are taken at the moment so they couldn't do that. Anyways we keep our fingers crossed and thanks again for all your precious advice.

Best regards.

Dear cksvelasco,
   My husband has a plastic stent. We won't let them put in a metal one at this time. It does not seem necessary since he does not have any tumor growth. The stent is mainly to keep his duct open because of scar tissue from his radiation treatments. He goes every 2-3 months to have it changed and does fine. My fear is the same as yours- what do they do if the metal one clogs? In time he may need a metal one if the tumor is in danger of closing off the duct . Good luck and best wishes for your Dad and your family. Take care. Mary