January 24, 2011 at 10:58 pm #47071joolz822Member
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!January 24, 2011 at 7:16 pm #47070gavinModerator
Welcome to the site. Sorry that you had to find us all but glad that you have joined us here as you will get a ton of support from us all. I can’t add anything to what the others have said to you about recovering from surgery as my dad never had surgery, but I just wanted to stop by here and welcome you to the site.
I’m glad that you have made a list of questions to ask the surgeon and this is a great idea as it is so easy to forget things to ask when you are in these meetings. And also what works is taking notes as well when you are meeting with docs etc if you can. I attended every meeting with my dad when he met with his docs and I forgot some of the things that we were told. But I would imagine that you being an ex military man you would be far more prepared than I would have been!
I hope that you get some answers to your questions today and I look forward to hearing more from you. And if we can help in any way then please feel free to ask any questions and we will all help if we can.
My best wishes to you,
GavinJanuary 24, 2011 at 4:57 pm #47069ritchieMember
Thanks everyone for your replies. I’m getting ready to leave for the surgeon’s office right now and don’t have time to read them. Therefore, I’ve printed them off and will read them on the way.
Thanks again. I’ll be getting back with you.
RitchieJanuary 24, 2011 at 12:50 pm #47068betsySpectator
I had 3/4 of my liver removed and my intestines re-routed (its called a roux-en-y). About 5 days later, I had surgery again to remove an abscess. It took me several months before I could return to a normal routine and about 6 months before I really felt good again. I had and continue to have complications from my surgery with 1 of my 2 remaining bile ducts. There is a leak in the duct that will not heal. It’s been a long road (2 years now) but I haven’t had a recurrence and in that regard, I’m incredibly lucky. I did not receive adjuvant chemo. I also take an anti-depressant but was taking them before I had cancer and I can’t imagine managing without it. I had no food restrictions except right after the surgery (and that was only a few days). I had no restrictions on pain medicine. There is one IV narcotic that I avoid like the plague called Dilaudid. I hallucinated on it in the hospital and it was very intense. For about 2 months, I had help at home with meals and the house cleaning. I also had family in and out to help with the kids. I was able to shower on my own but not wash my hair. I slept a lot and stayed in bed with my cats and dogs
I also strongly recommend you take someone with you to these first appointments and as much as you can, have someone in the hospital with you.
Take heart Richie, everyone seems to have their own unique experience with this cancer. You might not have a lot of the issues some of the others have had.
BetsyJanuary 24, 2011 at 3:53 am #47067lainySpectator
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.January 24, 2011 at 12:56 am #47066marionsModerator
Hello Ritchie and welcome to our site. Ritchie, your story is not unlike many others in that this cancer is detected during exploration for other health issues, that you are a former Vet, and that the true extent of this disease can only be determined during surgery.
Less often do we see, on this site, unsuccessful stint placements. You might want to consider another evaluation by another GI physician someone, very familiar with this procedure.
Recover from surgery has been described in the range of “easy” to all the way of feeling like “being run over by a truck”. Hopefully, others will enlighten you with their experiences. My husband encountered no problems with quality of life post recovery. He regained some of the weight lost and returned to his law practice within 3 weeks.
I don’t believe that you will encounter significant problems re: pain or food intake.
Most of all try to stay positive. And, please continue to reach out to us. Everyone on this site has experienced this cancer and will share their knowledge, give advise, and lend to you tons of support. Fingers crossed for the upcoming visit with the surgeon and please, stay in touch.
All my best wishes,
MarionJanuary 24, 2011 at 12:34 am #47065mlepp0416Spectator
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.
MargaretJanuary 23, 2011 at 11:38 pm #4659ritchieMember
I’m a 74 year old male, marine/army retiree (35+years), who recently discovered that I have cancer of the left hepatic bile duct. There was also the complication of a problem with a lymph gland in the Duodenum.
The tumor was incidentally discovered during a cat scan of the lungs. After that I received a MRI and an ERCP. an attempt was made to place a stint in the bile duct, during the ERCP, but it was not successful.
I’ll be meeting with my surgeon for the first time tomorrow. My GP has told me that there will be a need to remove the left bile duct and half of my liver. He stated, however, that they wouldn’t know for sure until they were inside and could further assess the situation. I have the questions, suggested by this site, for the surgeon.
My questions for those who read this are: Have any of you been in a situation similar to mine? What do I have to expect as far as quality of life after surgery? How soon can I handle my own personal care? Are there extensive restrictions on food intake or pain medications?
Any suggestions would be appreciated.
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