Unconfirmed Diagnosis Leaves Us Frustrated

My father recently experienced severe jaundice and after several tests and placement of a temporary biliary drain and a permanent biliary stent, his doctor feels strongly that he has bile duct cancer but because the tissue taken during an ERCP was not sufficient, a diagnosis could not be made.  His doctor did say that the "tumor" is nonsurgical, mainly due to his age (81).  His doctor suggests another diagnostic test but explained it will be very difficult to schedule because only a couple doctors in our area do it.  My father's doctor said we will be hard pressed to find an oncologist who will treat bile duct cancer (with chemo) without having a positive tissue biopsy.  We're left with the impression that he has cancer but have been told there's basically nothing we can do about it.  I understand that the prognosis for bile duct cancer is poor and feel that any time we waste now is less time that we will have with my father.

 Has anyone else been in this situation?  Is anyone familiar with further diagnostic tests that can be performed?  I am desperately searching for some answers.

On 3/16/2007 in Search of Answers wrote:

My father recently experienced severe jaundice and after several tests and placement of a temporary biliary drain and a permanent biliary stent, his doctor feels strongly that he has bile duct cancer but because the tissue taken during an ERCP was not sufficient, a diagnosis could not be made.  His doctor did say that the "tumor" is nonsurgical, mainly due to his age (81).  His doctor suggests another diagnostic test but explained it will be very difficult to schedule because only a couple doctors in our area do it.  My father's doctor said we will be hard pressed to find an oncologist who will treat bile duct cancer (with chemo) without having a positive tissue biopsy.  We're left with the impression that he has cancer but have been told there's basically nothing we can do about it.  I understand that the prognosis for bile duct cancer is poor and feel that any time we waste now is less time that we will have with my father.

 Has anyone else been in this situation?  Is anyone familiar with further diagnostic tests that can be performed?  I am desperately searching for some answers.

search for answers,

Find an oncoligist even if you have to travel, I had the same issue with my mother and the oncoligists where she lives were out over the holiday's and we had to wait 3 weeks but then went to the Arthur James Cancer hospital in Columbus ohio where they confirmed she had bile duct cancer and this cancer cannot be stopped but with chemo it can prolong their life and try to make their quality of life a little better.. It is so sad that not as much research has been done with this cancer. I will keep you in my prayers. hang in there and don't give up on miracles.

I understand what you are going through. My 82 year old mother in early Dec 2006 became jaundiced due to a bile duct stricture. A stent procedure followed which failed and had to be redone 10 days later and then again in Jan 2007. In late Jan she had a surgery for repairing her bile duct and the surgeon found cancer which had spread to lymph nodes and was inoperable.

 My mother refused to go thru chemotherapy and elected to go back to her apartment in a retirement community. I am grateful that she has remained mentally alert and she has not been in pain so far.

Within the past 2 days she has started to have difficulty walking. The hospice nurse indicates that she has lost some lung capacity in the past week and she has become quite jaundiced.

 I chose not to tell anyone at work except for my boss and told him I would need a few days soon. It wasnt until my boss asked me if she had her mind and then if she was in pain that I realized that we do have something to be thankful for.

 js

On 3/16/2007 in Search of Answers wrote:

My father recently experienced severe jaundice and after several tests and placement of a temporary biliary drain and a permanent biliary stent, his doctor feels strongly that he has bile duct cancer but because the tissue taken during an ERCP was not sufficient, a diagnosis could not be made.  His doctor did say that the "tumor" is nonsurgical, mainly due to his age (81).  His doctor suggests another diagnostic test but explained it will be very difficult to schedule because only a couple doctors in our area do it.  My father's doctor said we will be hard pressed to find an oncologist who will treat bile duct cancer (with chemo) without having a positive tissue biopsy.  We're left with the impression that he has cancer but have been told there's basically nothing we can do about it.  I understand that the prognosis for bile duct cancer is poor and feel that any time we waste now is less time that we will have with my father.

 Has anyone else been in this situation?  Is anyone familiar with further diagnostic tests that can be performed?  I am desperately searching for some answers.

I live in the state of Washington, and have had biliary cancer since May of 2006. I think that it is important that your father get another diagnosis as soon as possible.  I currently have three stents going from my liver to and draining into the dueodenum.  I have been on chemo since July of 2006 and have changed hospitals once. I am currently at the Virginia Mason hospital in Seattle. I finished my round of chemo and radiation on the 10th of January, and have now started two weeks on and two weeks off on chemo. In May of 2006 I was turned down by the UW Liver transplant as well as the Mayo clinic.  Looking back I think it was for the best, as I have now gained back 30% of the weight I lost and am tolerating the chemo very well, and by the way I am 67 and hope to get to be yours fathers age.

My physician currently has two patients that he has been treating with the Klakson tumor, one is int his seventh year and the other into his ninth.

Good luck and I hope you get some help for your father.

Pete up here.

Pete up here.

That is awesome that you have found a doctor that isn't affraid of treating the klatskins tumour.  My mom had seen plenty- all too affraid to do anything (3 weeks inpatient, discharged with 6-8 month expectancy- lived 15 days). I wish there was more we could have done.  It is really great to hear stories like yours.

Take care and god bless