Cholangiocarcinoma & best oncologists/surgeons

 

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

 

Dear Linda;

I haven't checked the board recently so I may be too late to offer any names of experts to help you through this diagnosis.  My husband was diagnosed in August of 07.  We have received state-of-the-art care and sensitive follow-up from our doctors and surgeon in NYC at Mt. Sinai.  There surgical oncology team is one of the best in the world and they deal with more cholangio cases than other hospitals.  The best oncologist by far in the treatment of this rare cancer is Dr. Howard Bruckner at Bruckner Oncology in NYC.  Please seek him out.  He is a remarkable man and doctor.  There may be a teaching hospital in your area that could conduct the chemotherapy under his supervision. 

 My very best thoughts and prayers go out to you.  the surgery will be trying but you can and will fight back.

 Sincerely,

Arlo1 

 

I have not been on this site for some time. I have been treated for
bile duct cancer and have survived since being given 3-6 months to live
at IU hospital in Indiana in 2000. YOU NEED TO GET A SECOND OPINION The only
way that I am still alive in MAYO in MN. You should contact Dr. Gregory
Gores. If the cancer has not spread to other areas of the body it may
be possible to remove the cancer and get a liver transplant. Dr Gores,
Dr Charles Rosen have saved my life.I made a one page website in their
honor. www.bileductcancer.org. email me at another email that I check
more often. --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--if I can be of further assistance.

Hi!

My very close family member has been diagnosed with
cholangiocarcinoma. We live in the St. Louis area and he is seeing a
Dr. in the area. They actually live in a very tiny town 3 hours from
the area. 

Can anyone give me some helpful advice. He has been
told his is stage 4. He began chemo last week and will take Chemo again
this week. He is trying to get an appt at Cancer Treatment Centers of
America, the Tulsa location. 

 I need help! I have read other
posts and also saw the mention of other Dr.'s. Are these Dr.'s
specialists in this medical field?

Joe has been told he is
terminal. He has three children the youngest age 8. What does terminal
mean for him? His Dr. will not give him a specific time line. He has
been told "no" where transplant is concerned. I feel they are receiving
very "vague" information. 

I would appreciate any advice or help. Feel free to message me or email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Bless anyone (and the family )who is dealing with this sickness. This diagnosis has left my family broken hearted.

 

On 5/3/2009 tnun71 wrote:

Hi!

My very close family member has been diagnosed with
cholangiocarcinoma. We live in the St. Louis area and he is seeing a
Dr. in the area. They actually live in a very tiny town 3 hours from
the area. 

Can anyone give me some helpful advice. He has been
told his is stage 4. He began chemo last week and will take Chemo again
this week. He is trying to get an appt at Cancer Treatment Centers of
America, the Tulsa location. 

 I need help! I have read other
posts and also saw the mention of other Dr.'s. Are these Dr.'s
specialists in this medical field?

Joe has been told he is
terminal. He has three children the youngest age 8. What does terminal
mean for him? His Dr. will not give him a specific time line. He has
been told "no" where transplant is concerned. I feel they are receiving
very "vague" information. 

I would appreciate any advice or help. Feel free to message me or email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Bless anyone (and the family )who is dealing with this sickness. This diagnosis has left my family broken hearted.

Yes, please tell him to get a second opinion.  I was diagnosed with bile duct cancer (stage 3) and had surgery in April 2009.  I had the Whipple procedure where the doctors took 1/2 of my pancreas along with the tumor in the bile duct.  The cancer had spread to 4 of 18 lymph nodes that they removed.  Dr. Russell Howerton at Wake Forest University specializes in this type of cancer.  The surgery was performed at NC Baptist Hospital in Winston-Salem, NC.

I'm now on my 3rd week of aggressive chemo (5FU - 24 hours a day) and radiation 5 days a week.  After 6 weeks of this treatment I will have 8 weeks of Gemzar. 

I pray your family member can get the best treatment for this disease that he can.