Left Hepatic Bile Duct Tumor

I”m 57 and had half my liver removed in Feb 2009 and stayed in the hospital about 10 days. I was in terrible pain and took every pain medication they offered. I needed help at home but luckily I have my family. I drove after about a month. Recovery took a long time but I had already been operated on in August and November of the same year; been through chemo and radiation so I was already done in.

But everyone if different. It could take you a less time to recover. I certainly hope so!

Hello Ritchie and welcome to our wonderful family. There really is no set recovery time, dietary habits, etc. as each person is so very different. My husband was in the hospital for 2 weeks and after 6 months worked part time and took up golf again. A good attitude is the best RX. Like Marion, I have not heard of an unsuccessful stint placement. My husband had a stint (exchanges too) for over a year. By the way he was 73. May I ask where you are being treated? Please come here to vent, ask or advise. We are here for you.

Hi Ritchie.

Welcome to the site that no one really wants to join. You will gets lots of support and suggestions from the others on this site.

My husband Tom was diagnosed with Cholangiocarcinoma in Mar ’08. Prior to that he was a fairly healthy 61 year old. His cancer was discovered when his liver enzymes elevated 10 x normal. After an ERCP with brushings from the site of the tumor we got the news that it was cancer. In June ’08 they removed the left side of his liver (Actually they took 3/4’s of his liver and his gallbladder)

He was in the hospital 3 weeks in total because his liver developed a leak. He did very well for 18 months but his doc’s did not do any chemo or radiation cause they had clear margins and did not feel the need for chemo.

So, 18 months later he started turning Jaundiced and I knew something was wrong. His new doc’s now say that if he’d had chemo after surgery he may not be in the position he is in today. In Dec. ’09, his then oncologist gave him 6 months and also said that chemo /radiation would not help. We did not listen to that and sought other opinoins. After 28 rounds of radiation and then oral chemo (xleoda) he is still here. They were also unable to get a stent internalized, so he has a drain going directly into his liver to drain off the bile.

We are currently at almost 14 months of life after he was told 6 months. As for quality of life, for the most part Tom’s quality of life is good. He gave up deer hunting this past year and we missed our annual fishing trip to Canada and flew to Flordia instead and had a very good time visiting our niece and her family.

Tom has always pretty much handled his own personal care, unless he feels too weak, then I step in to assist. If you have someone who can help care for you, that is wonderful (a spouse, family member or good friend) so they can assist you when you need help.

Tom did not have any restrictions on food that he could/could not eat. When he is on Chemo, the chemo does alter your taste for certain foods. That is about the only thing that I noticed. For instance, eggs just tasted terrible to him so we just did not have eggs! Tom has a great doctor who pretty much prescribes his pain medication as he needs it. I would also recommend that you speak to your doctor about an anti-depressant – right away and continue to take it daily. It will only help you get through any rough spots. Tom did not want to take it until he say what his mood swings were doing to me, now he takes it every day and life is back to normal.

Make certain that you write down your questions (else you will forget them!) and if your surgeon can’t answer them, ask him to research them and get back to you. Don’t be afraid to seek 2nd and 3rd opinoins if necessary. You need to have a lot of confidence in your surgeon! We fired the first surgeon who ‘wanted ‘ to do Tom’s liver resection because he did not give me any warm fuzzies and frankly we did not like his answers to our questions.

Do your research before you meet with the surgeron, line up someone to be with you during surgery and to be your advocate while you are hospitalized. Never take ‘no’ for an answer, ask what else can be tried when they say ‘no’.

There are some numbers that you would want to watch. Bilirubin level, Alk Phosphate, tumor markers just to name a few. Tom’s Alk Phosphate level was the one that was 10 x’s elevated and was the first clue that something was wrong.

Have they discussed placing an external drain for you? Tom will have his for the rest of his life because between the radiation and the tumor they believe that his bile duct is destroyed and cannot place an internal stent. But it is not as bad as it sounds and it beats the alternative.

Please feel free to ask any questions. I have been Tom’s caretaker for these past three years and we have pretty much been through it all. My best advice is to insist on some form of chemo after your resection, EVEN if they tell you they got clear margins! I wish I had known that three years ago when Tom had his resection.

Go with God and you KEEP KICKIN’ THAT cancer.
My thoughts and prayers are with you.

Margaret