Topic: Feeling alone

New member
Registered: Tue, 22 Jun 2010
Posts: 1
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?

Re: Feeling alone

minnie...welcome to our site. It appears that very little information has been shared with you and you are in need of further explanations.  Has your husband's color returned to normal?  What other testing has not shown anything?  Do you mean that his blood tests appeared normal?  Are any further treatments contemplated?  There are many questions to address when touched by this disease and you might want to consider contacting the treating physician in order to clarify some of the issues.  You might also want to consider gathering all medical records including, blood tests, ct scans, physicians

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Feeling alone

Thank you for your reply. it's wonderful to have someone to talk to. I wasn't sure I posted my message right.  The blood tests support the diagnosis, however the other tests such as MRI. MRCP, and the scrapings they took from the tumore all come up negative. We went to a surgeon at the University of WA and they gathered all the information and were supposed to call us a week ago friday with their recommendation for or against surgery, but he didn't call and then was on vacation last week.  The oncologist told me that 95%, he has the tumor sith a 6-12 month prognosis, but he didn't tell him that.  We go see the ONC next Friday so I am hoping for something a little more concrete and I will ask for copies of the labs.  I guess I better get on the phone to that surgeon too.  I would think that if they wanted to do surgery they would have scheduled it by now.

Re: Feeling alone

Thanks minnie for clarifying.  This is what I have learned:  Only matter larger than 1 cm will be visible on the scans (the thickness of the scan itself measures this size) therefore, other tests will be evaluated in order to support the diagnoses. Also, more times than not do we have members report for the scrapings to either, come back negative or, to come back as inconclusive.  Klatskin tumors  (or hilar cholangiocarcinoma) occur at the confluence of the right and left hepatic bile duct.  Generally, these tumors tend to lead to late diagnoses due to the fact that they become symptomatic at a later stage of the disease.  Consequently, a resection may not be achievable and treatment responses vary greatly therefore, second or third opinions are warranted. 
Regarding the prognosis:  The members on this board have taken on the stand of staying optimistic and realistic.  Many have outlived the predictions given and continue to do so.  I am hoping for other to chime in and to share some of their own experiences with you also. 
You might want to consider of reading up on previous postings regarding Klatskin tumor by using the "google search function", top, right hand side of page.  This will enable you to become informed and allow you to ask relevant questions at the upcoming visit with the Oncologist.  Also, I remember several people treated at the University of WA.  Again, you might want to use the search function in order to retrieve their threads. 
I agree with you in that I would contact the physician

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Feeling alone

Hi Minnie,

Welcome to the site. I am sorry to hear of your husbands diagnosis and also that you don't seem to have gotten a lot of information about his condition. I hope that you will get more information when you see the ONC on Friday and yes, getting on the phone to that surgeon too also sounds like a good idea.

The first we knew of my dads illness was when he started to go yellow with the jaundice. He was then admitted to the hospital and after all the tests, MRI, CT etc he was then diagnosed over 3 weeks later with inoperable CC. He couldn't get radiation either so he had PDT as his treatment. As I said, I am sorry that you had to join us all but glad that you did as you will get a load of support and help if we can from us all. Keep coming back and feel free to ask as many questions as you have.

You are right in that it is wonderful to have people to talk with who have been or who are going through what you are. I came here when my dad was diagnosed back in 2008 and eveyone here has helped me enormously, and I know they will do the same for you.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Feeling alone

Hello Minnie & Welcome to the best place you could possibly be in these circumstances.  Yes, I can relate to your experience & to the feeling of being so alone with it.  I think you'll find lots of others on here with similar experiences, too.  Please come & talk often - you'll find you're never alone on this site & you'll find a wealth of information if you do a search at the top of the page.

Julia

"Time may be a great healer, but it's a lousy beautician."

Re: Feeling alone

Thanks, everyone. Yesterday the surgeon finally called and they decided to do the surgery.  It might be as early as next week.  I'll know more today.  Does anyone know..do they always put an external drainage bag when they do the surgery?