Brother with Klatskin tumor
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My husband, age 75, was diagnosed with Klatskin tumor two months ago. He turned really yellow, had blood test results all winter that looked like he is in liver failure because the numbers are so high. Our family doctor sent us to a gastroenterologist that specializes in doing ERCPs. They did an ERCP and put in a stint and that doctor diagnosed him with Klatskin tumor, gave me a poor prognosis, and and sent him to an oncologist. Since then he has had all kinds of tests and it doesn’t show up on any of them. He spends most of the time in his bedroom watching tv and doesn’t want to know about it and the doctors we’ve seen since the ERCP don’t really say anything concrete. I feel all alone and I don’t know what to think. Does anyone have a similar experience with the diagnosing?
Reddobbie – there are those of us who have beaten our “expiration date” by years. I have been battling this for 2 1/2 years. There are a lot of factors that go into surviving longer that we don’t know about. I am relatively young and was in good health. I am sure that helped.
I think that your brother is entitled to search out another place for treatment if he so chooses. Definitely, I would encourage him to do go for another opinion. I can relate to your feelings of frustration. My family is in Germany but, I have been fortunate in that the physicians treating my mother have taken the time to speak to me per phone. Being that your brother is the patient, it might be difficult for him to absorb all the information coming his way. And, as you have mentioned, his fear of bad news may prevent him from asking the right questions. Is there someone who could advocate for him and would he be alright with that?
Best wishes,
MarionMarions…thankyou for the offer of the german translation…our frustration has been not being able to speak with a doctor about his care…it seems like my brother isn’t even able to talk with anyone. He says the doctors change constantly…they get his dosages wrong…he was sent for a procedure he wasn’t supposed to have…But he also doesn’t ask a lot of questions…he is getting better about taking charge of what is going on…but he is afraid of bad news when he asks questions…we have been to see him twice in the past year, and are going again in April or May…that has been great…its hard with all of us living so far apart..
reddobie…..I am of German descent hence I speak German fluently. Please, let me know if I can be of any help with the translation issues.
Best wishes,
MarionReddobie:
Keep the faith! This cancer is evil and the journey has many twists and turns. My husband had a resection in June 2008 and was ‘cancer free’ and had clean margins. In Nov 2009 he presented with jaundice and a ‘new’ tumor, inoperable.
We are fighting and he just finished 28 rounds of radiation. His bilirubin level was at an all time high of 24.7 and it is now down to 9.1. Your brother may need to seek 2nd and 3rd opinoins in regards to his care and treatment.
Use this site as a reference tool, learn all you can regarding treatment. The only dumb question is the one that you don’t ask.
Prayers are coming your brothers way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Thankyou everyone…my brother lives in Berlin Germany, and the rest of the family lives in US…he is there with his family…it has been frustrating for us with his course of treatment there, as we don’t speak German…and there have been some mishaps…But he is doing well right now…and they have changed his chemo to Gemzar…He was the picture of heath before this…thankyou for your encouragment…
Hi Reddobie,
Welcome to the site, although I am sorry that you have to be here. Please come back often and post lots and ask as many and any questions that you may have, as you you will get a load of support from us all. My dad’s CC was also inoperable and I was his carer throughout his fight.
I agree with what Marion and Lainy say with regard to statistics as who knows what lies ahead. From what you say, it sounds like your brother is doing good right now so perhaps it is best to focus on the now and enjoy life as best you can. And please, try and stay as positive as you can.
My best wishes to you and your brother,
Gavin
Hi reddobie and Congratulations to your brother who is already a big survivor.
Welcome to our Family. CC is such a puzzle and with everyone being so different and having so many different kinds of symptoms and treatments it is impossible to “plan” ahead or give statistics or to know what is going to happen. Therefore we just don’t listen to statistics and none of our Family was born with an expiration date. The best is to live in the here and now. Lord knows, it takes enough energy just to do that. We have quite a few who have beat their odds by years. Be so happy that he is doing so well, enjoy all your time together and fill your life with love and laughter. Also, please keep in touch regarding his progress and know we are all cheering for him.reddobie…welcome to our site. I am happy to hear that your brother is feeling well. Where has he been diagnosed and has he perused other opinions regarding the non-resectability of his tumor? I believe it to be of most importance to consult with physicians diagnosing and treating a high volume of Cholangiocarcinoma/bile duct patients. We have seen much variable regarding the opinions of doctors and you would want to make sure to have accquired the opinion of an expert. But, you may have already done so. Regarding life expectancy: Kris made the statement which had a profound effect on all of us:
Hi all…my brother was diagnosed one year ago with Klatskin tumor, unresectable…he has been getting chemo and stent changes ever since…you wouldn’t even know he was ill with this, except for when the stent gets infected…he just started on Gemzar…my question is: can someone prepare me for what to expect now that he is one year in, and seems to be doing well…I really want to know an average of how much time he may or may not have…thankyou for your answers…
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