Cholangiocarcinoma & best oncologists/surgeons

I am 52 and was just diagnosed with cholangiocarcinoma.  I went to my general practitioner with ulcer-type symptoms (or gallstones).  I had no other symptoms other than occasional and recurring pain in the middle stomach area.  He said I had gastritis and prescribed prevacid.  Since it didn't help, I went back, but my GP was unavailable.  I saw an associate, who decided to look further and did an ultrasound and found something suspicious.

I've had a CT scan, MRI, Nuclear imaging of spleen and liver, blood tests for tumor ensymes in Pancreas, and a liver biopsy.  The gastrologist and MRI doctor said I had inter-hepatic cholangiocarcinoma in the left lobe of the liver that appears to have stared in the bile duct (8 cm) and has not spread to the lymph nodes, spleen, pancreas or gallbladder or appeared to have metastatised to anywhere else.  They have not done a chest CT yet to determine if it spread to the lungs or breast (or came from there).  They are saying it appears to have originated in the bile duct.

I have been referred to a local surgeon (in my medical group) and an oncologist, however, I want to find the best that I can for what appears (by things that I have read) to be a rare cancer that afflicts older individuals with other illnesses or diseased livers.  I am an otherwise healthy woman with a healthy liver.  I live in the Chicago area and others have mentioned the University of Chicago Hospital as well as Northwestern University Hospital.

Do I need to find a specific doctor there first, or can I just be referred to those hospitals and then find a doctor?  What should be my next step?  I have an appointment tomorrow (03-12-09) with the surgeon to discuss possible treatment.  I really thought I should be going to the oncologist first.  Anyone have any helpful suggestions?

Linda

Hi Linda,

Sorry to hear what you're going through, that is a difficult diagnosis.

Hopefully others will confirm my thoughts regarding a surgeon. I believe you need to see a hepatobilliary specialist. A surgeon that does these types of surgeries often. You don't want any surgical procedure having to do with the liver and bile ducts done by just a general surgeon. In other words, don't let them practice on you.

In November of '08 we took my mother to Abbott Northwestern in Minnesota ( 1,000 miles away ) to see a hepatobilliary specialist that came recommended to us. My mom had the horrible Whipple surgery and has come through it very well with no complications.

You can find out what your surgeon recommends, but I would definitely have a specialist do any surgery. Don't know why you would need to see and oncologist right now unless surgery isn't an option.

If you want the name of the surgeon that did my mom's surgery, just send me a private message and I will locate the contact numbers for his assistant. We just called and went there and worried about the insurance later.

I believe it's very important for you to act quickly. Be your own advocate, you'll need help with this.

Did they do a fine needle biopsy or ERCP, how did they confirm it was malignant?

On 3/11/2009 Angel Z wrote:

I am 52 and was just diagnosed with cholangiocarcinoma.  I went to my general practitioner with ulcer-type symptoms (or gallstones).  I had no other symptoms other than occasional and recurring pain in the middle stomach area.  He said I had gastritis and prescribed prevacid.  Since it didn't help, I went back, but my GP was unavailable.  I saw an associate, who decided to look further and did an ultrasound and found something suspicious.

I've had a CT scan, MRI, Nuclear imaging of spleen and liver, blood tests for tumor ensymes in Pancreas, and a liver biopsy.  The gastrologist and MRI doctor said I had inter-hepatic cholangiocarcinoma in the left lobe of the liver that appears to have stared in the bile duct (8 cm) and has not spread to the lymph nodes, spleen, pancreas or gallbladder or appeared to have metastatised to anywhere else.  They have not done a chest CT yet to determine if it spread to the lungs or breast (or came from there).  They are saying it appears to have originated in the bile duct.

I have been referred to a local surgeon (in my medical group) and an oncologist, however, I want to find the best that I can for what appears (by things that I have read) to be a rare cancer that afflicts older individuals with other illnesses or diseased livers.  I am an otherwise healthy woman with a healthy liver.  I live in the Chicago area and others have mentioned the University of Chicago Hospital as well as Northwestern University Hospital.

Do I need to find a specific doctor there first, or can I just be referred to those hospitals and then find a doctor?  What should be my next step?  I have an appointment tomorrow (03-12-09) with the surgeon to discuss possible treatment.  I really thought I should be going to the oncologist first.  Anyone have any helpful suggestions?

Linda

I am going through a similar experience.  Dx with Cholangiocarcinoma (adenocarcinoma) which is confined to bile duct but which is also peri pancreatic or wrapped around the head of the pancreas.  I was sent by my primary to the hospital and from there was referred to a Gastroenterologist who did an ECRP/MCRP and EUS ( all endoscopic exams of the area.)  The intent was to obtain a biopsy which was not possible because of a vein which ran across the anterior side of the tumor..  I was told it was a stage 1, 5 cm tumor and would be easily remove.  "Brusings" showed it to be Adenocarcinoma.  A "Whipple" was the "treatment standard" which meant they would take tissue adjacent to the bile duct from my liver, pancreas, small intestine.  I underwent surgery on Feb. 17 with the expectation that the tumor would be removed and while recovery would be long I would likely be "cured."  The tumor was inoperable because it was wrapped around the mesentary arterey and a vein.  The docs were unable to view the underside of the artery or vein and had concern that if they kept cutting they would cut the artery itself and I would "bleed out" on the table.  They closed me back up and I'm in the process of recovery from my would which dehissed while healing.  I now have a "would vac" which is suctioning secretions and pulling the sides of the wound together.  While this occurs I am meeting with hematology oncologists, radiation oncologists, will be having a PET scan and another CT scan.  I'm considering a clinical trial. I I thought you might be interested in reading about the clinical trial because you can be a part of it whether or not your tumor is resectable.  I've spoken with three oncologists about it and they all say they would do it and only one of them is actually involved in the trial.  One important piece of information you did not mention in your post is the location in the bile duct of your tumor.  Anyway here is where you can get some info on the study www.NIH.gov.  In the search box type AdV-tk.  There are studies going on all over.  When you pick one call the clinical coordinator and s/he will tell you about the study and send you some info.  

 If you find anything that is different from the same old chemo/radiation or advanced chemo please lmk.

I wish you well.

Hi Linda,

I am so sorry about your diagnosis.

I suggest you see Dr. Mark Talamonti who is Chief of Surgery at Evanston Northwesterm Hospital.  He has extensive expertise in Whipple surgery and is a very compassionate man as well.  He was my husband's surgeon in 12/06 and we both loved him.  He was at the Lurie Cancer Center of Northwestern Memorial Hosp  prior to his current position and is also on the board of Medical Advisors of PanCan, a national organization for pancreatic cancer.

Whipple surgery is very demanding and involved and the more experienced the surgeon is, the better the outcome for the patient.  You can't fo wrong with Dr. Talamonti, a very gifted surgeon.

Good luck.

Joan L

On 3/11/2009 Angel Z wrote:

I am 52 and was just diagnosed with cholangiocarcinoma.  I went to my general practitioner with ulcer-type symptoms (or gallstones).  I had no other symptoms other than occasional and recurring pain in the middle stomach area.  He said I had gastritis and prescribed prevacid.  Since it didn't help, I went back, but my GP was unavailable.  I saw an associate, who decided to look further and did an ultrasound and found something suspicious.

I've had a CT scan, MRI, Nuclear imaging of spleen and liver, blood tests for tumor ensymes in Pancreas, and a liver biopsy.  The gastrologist and MRI doctor said I had inter-hepatic cholangiocarcinoma in the left lobe of the liver that appears to have stared in the bile duct (8 cm) and has not spread to the lymph nodes, spleen, pancreas or gallbladder or appeared to have metastatised to anywhere else.  They have not done a chest CT yet to determine if it spread to the lungs or breast (or came from there).  They are saying it appears to have originated in the bile duct.

I have been referred to a local surgeon (in my medical group) and an oncologist, however, I want to find the best that I can for what appears (by things that I have read) to be a rare cancer that afflicts older individuals with other illnesses or diseased livers.  I am an otherwise healthy woman with a healthy liver.  I live in the Chicago area and others have mentioned the University of Chicago Hospital as well as Northwestern University Hospital.

Do I need to find a specific doctor there first, or can I just be referred to those hospitals and then find a doctor?  What should be my next step?  I have an appointment tomorrow (03-12-09) with the surgeon to discuss possible treatment.  I really thought I should be going to the oncologist first.  Anyone have any helpful suggestions?

Linda

Hello Linda,

I'm going to make to short and quick...do NOT let a regular surgeon do surgery in this area....you need an very very specific surgeon to handle this matter. The surgeon that can help you is a liver transplant surgeon and he or she better be practicing at a very large hospital that performs at least 150 + cases per year.  This surgery is not for your all around surgeon. 

This Bile Duct cancer is very rare. When my wife was diagnosed with it , she was 53....she in now 59 and doing pretty well, but not perfect and will never be perfect...recovery is forever.  She was treated at the UCSF Medical Center in San Francisco.  

I will watch for your message to how you are progressing.

Leonard from Alamo Ca   

nanaregi,

To whom is your question directed?  If it was to me, my husband had his Whipple surgery at Northwestern Memorial Hospital in Chicago.  His surgeon was  Dr. Mark Talamonti.

Joan L

Linda call the ctca  cancer treatment centers of america