Please help! My dad may have bile duct cancer!

My dad may have bile duct cancer!  We don't know what to do.  Please help.  His story: 

It all started when doing a routine physical they noticed that his blood test for his liver was irregular.  He was told to have an ultrasound to determine the problem.  They found that his bile duct was dilated.  To look for any tumors he had a MRI and CT scan and they could not find any tumors.  They then decided to do an ERCP to put a stent in the duct and do some brushings.  They found atypical cells, but the doctors could not say that it was cancer but that the still suspected cancer.  Next they decided to do an EUS (I think that's what it was called? Some type of endoscopic ultrasound.) and still they could not find any tumors.  Next they did a blood test called a ca19-9 and it came back at 24 which is supposed to be the normal range.  The doctor still doesn't know and could confirm that he has cancer, but referred him to a surgeon that no wants to do the Whipple procedure on a 50/50 chance that he may have cancer.  This seems very drastic on a 50/50 chance. 

1. It it normal for doctor's to recommend this when they still cannot say it is cancer?

2.  We live in Cincinnati but are willing to travel to get the best surgeon.  Who is the best to do the Whipple if he needs it?

 3.  Where is the best facility to go?

4.  Are there other options instead of the Whipple (i.e. take out gallbladder and bile duct only?)?

 5.  Who are the oncologists that specialize in this?

 Sorry for so many questions, but we just do not know where to begin.  Any help will be greatly appreciated. 

I live in the same area. I too had a doctor here push for the Whipple surgery. I went instead to Dr. Tanig Shakoor, a top GI specialist who studued under one of the leadiing PC doctors in the country for a second opinion. He sent me for a EUS/FNB and had Dr. Nav Grandhi in Montgomery  do it at Bethesda Hospital. Dr. Grandhi just called me last week and said my tests were a small benign mass on the pancreas tail and all my tests were fine. He wants to see me in 3 months for another EUS and I trust him completely.

Ohter than that you could try the Pancreatic Cancer Center at UC Hospital which is also a top hospital for pancreatic research and treatment and have even done some successful pancreas transplant surgeries..

Good luck to you.

On 4/28/2007 Seven22 wrote:

My dad may have bile duct cancer!  We don't know what to do.  Please help.  His story: 

It all started when doing a routine physical they noticed that his blood test for his liver was irregular.  He was told to have an ultrasound to determine the problem.  They found that his bile duct was dilated.  To look for any tumors he had a MRI and CT scan and they could not find any tumors.  They then decided to do an ERCP to put a stent in the duct and do some brushings.  They found atypical cells, but the doctors could not say that it was cancer but that the still suspected cancer.  Next they decided to do an EUS (I think that's what it was called? Some type of endoscopic ultrasound.) and still they could not find any tumors.  Next they did a blood test called a ca19-9 and it came back at 24 which is supposed to be the normal range.  The doctor still doesn't know and could confirm that he has cancer, but referred him to a surgeon that no wants to do the Whipple procedure on a 50/50 chance that he may have cancer.  This seems very drastic on a 50/50 chance. 

1. It it normal for doctor's to recommend this when they still cannot say it is cancer?

2.  We live in Cincinnati but are willing to travel to get the best surgeon.  Who is the best to do the Whipple if he needs it?

 3.  Where is the best facility to go?

4.  Are there other options instead of the Whipple (i.e. take out gallbladder and bile duct only?)?

 5.  Who are the oncologists that specialize in this?

 Sorry for so many questions, but we just do not know where to begin.  Any help will be greatly appreciated. 

 

 

hello   we live in indiana, about 1 1/2 hours south of indianapolis. my husband had the whipple done by dr keith lillemoe who hails originally from the john hopkins university in maryland. he did an excellent job..and my husband is recovering nicely from that surgery which was done in november of last year. he also had the ercp where they found a mass, placed the stent and did brushings which were suspicious for cancer. this made our decision to have the whipple done much easier. for you, it might be a good idea to have a second opinion before you make that final decision. on the one hand, the whipple is a very intense surgery (jim had a portion of his pancreas as well as the gall bladder and part of the duodenum removed) with an estimated hospital stay of 7-10 days. on the other hand, if it is indeed pancreatic cancer, then time is of the essence because this type of cancer is VERY aggressive.  iumedcenter has a website and dr lillemoe's number is 1 317-274-5771. there may be a place closer to you in ohio. try getting on the internet.  this web site has been very helpful and encouraging to me and my husband. and there are some other websites such as pancan.org. i wish you the best. jimandkathy

Please get your Dad to a specialist - wherever you live, there must be a specialist that can help you

GOOD LUCK - and Please go quickly

Toni

I don't recall readsin where you live but I can tell you that some of the best care in the world for bile duct or pancreatic cancer is at Johns Hopkins University.  Dr Kustis Campbell is an excellent surgeon if one is needed.

My mother was dx with this in august 06  has a whipple @ hopkins and took chemo and is still taking shemo.  The best advise I can give you is read and learn everything you can.  Also remember that cancer feeds on refined sugar.  Nutrition is everything getting through something like this and most of all quality of life is sooooo... important.  I have my mom on Ambortose also which is an immune builder by a company called Mannatech.  I really think you have to look at the whole picture when someone is faced with this disease and they need to determine what route they want to take.  Hang in there and fight for very thing you can.

Best wishes to your family

Cindy B