Bile Duct Cancer

My husband has been diagnosed with bile duct cancer.  Is there anyone that has had the whipple procedure.  I would like to know the success rate and what the complications are.

I was diagnosed with Bile Duct cancer in January 2008 and had a whipple operation in February.  The one thing I would recommend would be to find a doctor that does a lot of these operations.  The operation is very rare and complicated and the recovery/survival rate is much higher with an experienced surgeon.  In my case the hospital I was originally at in Tampa would not even do the operation.  They had me transferred to a another hospital in Tampa and a doctor that does 3-4 of these operations a month.  It really makes a difference.  

I was diagnosed with cholangiocarcinoma (bile duct cancer) in October 2002. I had a whipple's procedure and did not need any radiation or chemotherapy afterwards as the lymph glands surrounding the tumour site were clear.I was aged 51. I owe it all to a good surgeon who I visited regularly till last year (my 5 years was up) and I dont have to go back. I recovered well. I felt very tired and it took me a few months before I could resume somewhat normal activities.

I felt so good that I started travelling around Australia in a campervan. Unfortunately I developed hypothyroidism and have been tired ever since. One doctor says that it was caused by the trauma of  the operation on my body but I guess we will never really know. I take ranitidine 150mg 2x daily to reduce my stomach acid so that the anastamosis (the join) between my stomach and jejunum does not ulcerate. I dont know if this is standard medication. My surgeon could be overly cautious. I dont know.  

I have blood tests every 6 months to monitor my cholesterol and blood sugar. My diet is normal. I eat less fatty/oily food than most people. I havent had pizza or hot fried potato chips(fries) since 2002!

I exercise regularly by walking on the beach. My immune system is not as strong as it was but that could be caused partly by hypothyroidism and getting older. I am so thankful to be alive!

I hope I have helped you. All the best

Annettebyron

 

 

 

 

I just found out that my mom has the same kind of cancer. She had 1 cemo treatment. And the doc's in Fargo ND had nothing good to tell her. Me and my 3 sisters and Grand kids are doing everything to help get another opinion and to go to  Mn. to the mayo clinic. I'm sorry i cant help you with your Question. But to who ever reads this and can relate please let us know what all the options are and anything I find out i will sure do the same.                  

Thank you so much for your input.  You did help with some of my questions.  It's so reassuring to hear from surviors of bile duct cancer.  I was really feeling pretty hopeless until some of you  replied to my message.

We see to surgeon in Grand Junction on Wed.. April 9th.  We are supposed to go to Denver for another stint change and biopsy on the 22nd and also talk to the surgeon there.  From there we are hoping to get an our of area pre-authorization from our insurance company to go to the Mayo clinic.

Again thank you and most of thanks for the prayers.

 

Joann

 

 

How are you doing since the surgery?  Any complications?

We will get to a surgeon that has lots of experience since that seems to be so important.

Thank you so much

Joann

Thank you so much for your reply.  Everyone that has responded has helped us with questions we have.

Sounds like you have had some complications but not bad for what you went through.  At least I know some things to look for after surgery.

Again thank you

I will keep you in my prayers.

'Joann

 

 

 

On 3/28/2008 Slushy wrote:

My husband has been diagnosed with bile duct cancer.  Is there anyone that has had the whipple procedure.  I would like to know the success rate and what the complications are.

Yes I had bile duct cancer and I did receive the whipple procedure two years ago.  I am 44 years old now and recovered from it reasonably well.  I found out about the cancer when my bile began backing up into my bloodsteam.  After blood test and getting scoped from gastroenterologist they found the mass where the the bile duct meets into the duodenum of the small intestine.  I had the surgery performed in Birmingham AL.  There were complications with my case because  my blood was so contaminated with bile it hindered my ability to clot properly.  I internally bled six days after the surgery which resulted in bile duct damage.  I spent 28 days in the hospital and an additional 4 days two weeks later.  I had to wear a ostomy bag with a catheder threaded through the bile duct.  After the bile duct healed the catheter and ostomy bag were removed.  I went into the surgery at 175 lbs.  I bottomed out at 128 lbs.  I am now 155 lbs.  I talked to others who have had the surgery and they were out of the hospital in 10 days.  My case was different because of the aformentioned reasons.  Surgery and recovery is tough.  Get yourself and your husband mentally prepared.  It will be two years for me on June 1.  I am physically active and all things considered in very good shape.  The only medication that I take is Pancrease MT 20.  This is an enzyme that helps me digest fats better, otherwise I pass the fats and have a hard time gaining weight.  In retrospect regarding the surgery,  I would have been in much better condition had they given me a blood transfusion.  I was scheduled to have the surgery June 8, 2006, but because of the amount of bile backup I would not have made it another week.  I was itching so bad and I believe my kidneys would have failed trying to filter out the bile.  The surgery as a result was reschelduled for June 1st.  I did have bile duct stents applied twice, but they plugged immediately.  Hopefully your husband is not experiencing the bile back up.  If he is, make sure his blood is in order prior to surgery.  Make no mistake it is one of the tougher surgeries to recover from, but he will recover. The success rate is high these days assuming you are having it done by a doctor who is experienced in this type of surgery.  After the surgery get him eating and get him excercising as soon as possible.  Its hard but it will accelerate the recovery.  I hope this helps.  Please respond if any more questions or if you need to talk.

 

What kind of cancer did you have,

My husband has tow kinds, carcinoma inside the bile duct and another type outside the bile duct.

He is scheduled for surgery on the 23 of June.

He has had 8 stints changed within the last year.  We are hoping the one he got on May 1 will last till his surgery.  He is having blood test done twice a week since they seem to plug up for no reason.

They are being extra careful since last April (2007) the stint plugged and did get into his blood and got sepsis had to have dialysis.  That being behind us we are hopeful he has his strength back to almost normal and will make it thru surgery with no problems

 

Joann