Klatskin Tumor

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Klatskin Tumor

by Jackeline on Sun Mar 27, 2005 12:00 AM

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Hi, my name is Jackie and I was wondering if anyone out there knows anything about klatskin tumor. I had surgery in December on 2004 in which a resection was done and 50 percent of my liver was taken out. My 5 year prognosis is poor. I wake up every morning almost in a panic state and its constantly on my mind. My lymph nodes were not affected and the margin of the liver came back negative. My doctor said the chances of the cancer coming back is 50/50. I am trying to be very positive about it but truthfully its driving me crazy, every little pain I get I think the worse. My doctor said there is no treatment for a Klatskin tumor. If anyone out there has had the same cancer I would love to hear from them.

Re: Klatskin Tumor

by Rupke on Thu Mar 31, 2005 12:00 AM

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Hello Jackie, I'm Rob, Dutch and 40 years old. In July 2004 a Klatskin tumor was discovered. I had surgery in November 2004 in which a resection was planned. During surgery they discovered this wasn't an option and they only took out my galblather. No further threatment seems to be possible. Like you I also get worried by everything I feel. Even a simply digestion freaks me out. I can assure you that the surgery alone is responsible for most of those "pains". I myself have a constant feeling like having a bowlingball in my stomic. Sometimes it feels like I have barbed wired on both sides of my stomic, directly under the skin. Maybe this is a direct result of the big scarves. In your case I would be optimistic after a succesfull resection and hope for the best. I would like to know if the "pains" that I discribed sound familiar. I would like to hear more from, meantime keep your chin up. Kind regards, Rob.

Klatskin Tumor

by Jackeline on Thu Mar 31, 2005 12:00 AM

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Hi Rob: Thank you for replying to my message. If you don't mind me asking why couldn't a resection be done, was the tumor in your bile duct or just the gall bladder. Yes, you are right about the operation, barb wire is one way of putting it, I still get some very sharp pains. Did the tumor affect your liver? I am a little older than you, 56, and I am a Canadian. Did they tell you that chemo or radiation does not respond to this type of cancer. If you feel like discussing it more feel free to. Thank you again for responding.

Re:klatskin Tumor

by Rupke on Fri Apr 01, 2005 12:00 AM

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Hi Jackie, After several Echographic tests and CT-scans there was still nothing visualized. After a ERCP they came to the conclusion that it has to be a Klatskin tumor due to the location of the tissue (the upper bile duct and part of the liver). During surgery they dicovered the liver was infected by 80%. Even a main bloodvessel was infected. So resection was not an option. During the operation they took some tissue for laboratory tests. They found no malicious tumorcells, so they can't call it a Klatskin officially. That's why I can't get Chemo- or Radiotherapie. Radiotherapie is not effective and I only know of two experimental Chemotherapie treatments which they use in an Accademical Hospital in Amsterdam. I found some English information on the following site: www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/research/CLINICAL%20STUDIES.html I hope I have answered some of your questions and Yes I feel like discussing it more. So, speak to you soon.

Klatskin Tumor

by Jackeline on Wed Apr 06, 2005 12:00 AM

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Hi Rob: They also told me the same thing, radiation or chemo will not help this kind of tumor. It really took me by surprise as I thought all tumors could be treated with radiation or chemo. I don't know about you but I keep having these spells where I get a fever and chills, this has happened to me twice in less than a month, but the next day I usually feel okay. I hate running to the doctors everytime I think there's something wrong. Did you get a prognosis. This cancer really plays a number on your mind, no one knows until they have to deal with it. Anyway hope to hear from you soon.

Re: Klatskin Tumor

by Rupke on Fri Apr 08, 2005 12:00 AM

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Hi Jackie: I have had high fevers too. The last time (3th time) was about 15 days ago. I stayed in the local Hospital for 5 days. They gave me several antibiotics and performed an Echo and a E.R.C.P. but found no cause. The first two times I had a bacteria in my blood that caused this fever. At first they had planned to do a MRI-scan in combination with contrast-liquid containing metal, hoping to visualize the klatskin. Due to the fact that I have 2 metal wallstands this probably won't have much success. On april 26th they want to perform a ordinary CT-scan instead with a special type of contrast-liquid. In your case I would let your doctor know about these spells. Perhaps it means nothing much, but I would let him decide that. How did they discovered the Klatskin tumor in your case? Did they know how big it was before the surgery? As an answer to your question about my prognosis: They told me last november that "there are not many patients who are still able to walk around after one year". (they were convinced a had unoperable klatskin) During the last evaluation (january) they couln't determine that I had a Klatskin for 100%, the tissue seems to be "friendly". So my prognosis seems to be better now but very uncertain. We have a saying for this but I don't know how to translate it. (Like: keeping an open mind) So enough for now. Untill later...

Klatskin Tumor

by Jackeline on Fri Apr 08, 2005 12:00 AM

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Hi Rob: Thank you for replying to my last message, I am so glad I have someone to talk with that has the same condition as me. In answer to your question about how they discoverd my tumor is because of the weight loss and jaundice and very very tired. I was hospitalized in one hospital in our area for two weeks doing all kinds of test, they put a stent in the bile duct, the doctors here still wasn't sure what was going on but they did suspect cancer, they sent me to Halifax, N.S to a specialist there, they were sure is was a tumor also, so they operated, took out the bile duct and like I said 50% of my liver, it was on both lobes, they went as far as they could go. I have to see him again in July so I will ask more questions. If the fevers happen again I will see my doctor here, do you still get tired. I get so tired by around 3pm I can hardly move, I will be so glad to get back to normal, whatever that is. Hope to chat with you again Rob.

Klatskin Tumor

by Jackeline on Fri Apr 08, 2005 12:00 AM

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Hi Rob; I forgot to tell you they didn't know how big the tumor was before surgery, but they did prepare me that it might have envaded the liver.

Re:klatskin Tumor

by Rupke on Sat Apr 09, 2005 12:00 AM

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Hi Jackie: Like you I'm also glad to have someone to talk with that understands what I'm feeling. About you being so tired, I think that your liver, growing back to its full size, can cost you a lot of energie. Your specialist may confirm that. I don't have these tired moments but I didn't have the surgery you had. I also lost a lot of weight (18kg) but I gain about 15kg. I never had jaundice, which they couldn't understand. I have two suggestions for your appointment with him in July. a)Write down all your questions and explain what you have been feeling. Now you have enough time to think about the words you want to use and which words discribe the best how you are feeling now. b)Ask him if he is OK with you recording the conversation. The amount of information he provides is hard to swallow in such a short time. So you will be able to playback the conversation and might hear things that you have missed earlier. Sometimes it's not only important 'what' he said but also 'how' he said it. You are able to playback the conversation together with a friend or with a family member. It rules out a lot of questions or even discussions. I did this during my last appointment and I felt very comfortable to hear back some of his remarks. I also like to learn from you how they planned to monitor your progress and how they can confirm that the tumor stays away. Which tests are they going to perform? What kind of medication are you still taking? Well this seems to be enough for you to think about, for now. Talk to you soon...

Re: Klatskin Tumor Also

by Kandice on Sat Apr 09, 2005 12:00 AM

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I have read your messages and all of Robs responses. I, too, had surgery in December of 2004 for a Klatskin tumor. Supposedly, mine was in only one lobe and they were able to remove that 1/2. My problem has been with the drains that they put in after the surgery. I have had 6 different sets of drains and each time they wouldnt drain properly and Id end up with an abscess, indicated by temperature and infection. They ended up having to open the incision again to clean out the abcess and I've had to have my right lung drained twice from fluid build up. I ended up staying in the hospital the whole month of December. I believe my tumor started at least 2 years before it was diagnosed, and then only because I got real ill and jaundiced and ended up in the hospital. My symptoms were not necessarily normal and were passed off as age related symptoms or some other reason. However, it all makes sense now that I know why. I've tried doing some research on these tumors, in between being sick and hurting, but havent found alot yet. I am 50 and live in Texas. I'd love to hear from you or Rob. Thanks, Kandice
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