January 28, 2008 at 7:32 am #18924daastorrMember
Thank you all for your warm greeting…I appreciate all your feedback and I look forward to learning more about CC and how to best help my Mom.
DebbieJanuary 27, 2008 at 3:23 am #18923
Sorry to hear about your mom. My dad’s only symptom was the indigestion and the high liver enzymes. Other wise he feels fine too. Such a strange thing. Well, I guess you can at least be thankful that they found it and it sounds like it is small and operable. Best of luck. Keep us posted.
LindaJanuary 26, 2008 at 12:55 pm #18922peterMember
Just to reinforce what everyone else is saying. Small is good, Surgery is good. And surgery is KEY!!! If he’s eligible realize this is a gift not everyone gets as it can give him added years and quality of life.
If you have any inclination toward alternative therapies in the NY area you should check into:
They are expensive and not covered by insurance in my experience but Dr Chang is trained in both eastern and western medicine, was on staff at Sloan Kettering and Cornell, and provides some other approaches to fighting CC.,
-PeterJanuary 25, 2008 at 7:17 pm #18921marionsModerator
there will be many wanting to share information with you. You might also want to use the “Search” function on top of the page. It is of great value when looking for specifics which may have already been addressed in the past by others.
So glad for you to have found us,
MarionsJanuary 25, 2008 at 4:18 pm #18920jmoneypennyMember
The doc who works at Columbia may be a good option too – like I said, some of the big hospitals are so overworked and overcrowded, that the smaller hospitals may make it a better experience, as long as the doc is good. I would get 2 opinions if I were you, and see which oncologist you like. My mother saw a world-famous oncologist but I didn’t like his uncaring manner, and I would have preferred someone more human, even if he didn’t have as much expertise. I was in the process of getting a second opinion when she died, and I wish I had done it sooner. You have to find someone who will be available to you and communicate and make you feel comfortable. Best of luck in your search – there are lots of great docs out there, I just didn’t find one in my limited time.
JoyceJanuary 25, 2008 at 4:13 pm #18919daastorrMember
Hi Linda and the others,
I’m so sorry to hear about your Dad…
My Mom 68, also was just diagnosed on Tuesday with CC and is being treated at Sloan Kettering. This has been quite a shock for my family as she has not showed any symptoms and looks and feels great. They found the tumor in her liver from a blood test in which her liver enzyme levels were slightly elevated. She has undergone the various scans, biopsies, etc and there are no signes of anyother masses.
I’m having such a tough time accepting this challenge that is unfolding. I am glad I have found this site as it seems there are so many of you that have been through this that can offer much support, information and comfort.
DebbieJanuary 25, 2008 at 4:43 am #18918
Thank you for your replies. This is very helpful. I would like to try Sloan Kettering for my dad. His gastroenterologist suggested a doctor at Columbia Presbyterian who also works out of Holy Name Hospital in NJ. My dad is a homebody and doesn’t want the surgery in the city, but i think he just needs time to digest everything. We just want the best for him.
I wish you all the best also. I will be checking the site often. I’m so glad I found this website!
LindaJanuary 25, 2008 at 3:54 am #18917jmoneypennyMember
Sorry about your dad – but it is a good sign that the lesions are small, so try to find the best care possible. Some people on this board have been succesfully holding off cc for YEARS and YEARS. My mother was in New York, I’m in New Jersey, and I’ve heard Sloan-Kettering is good – I do NOT recommend NYU, though they have state-of-the-art doctors and knowledge, because they are overcrowded with desperate people and the doctors are not very sympathetic, in my opinion.
Best of luck to you!
JoyceJanuary 25, 2008 at 1:23 am #18916jeffgMember
Hi Linda…. I initially thought that was my problem(acid reflux) back in March,1999. I took a very aggresive approach and was on the operating table within 2 weeks. MY CC had already encompassed most of my left lobe and during surgery found on gallbladder as well. Like Stacie mentioned the smaller the better in my book and the sooner DX and have surgey the better. Positive can do attitude is a must. Advocate hard for the best. After surgery also consider or ask about adjuvant therapy. Linda, wish your Dad the best and prayers of support coming your way.
P.S. Please let us know if you have any questions as things progress. Please click on Cholangiocarcinoma above and then click Major Cancer Centers. We are familar with their reputations.January 24, 2008 at 11:57 pm #18915stacieMember
We are very happy to have you. Sorry about your dad. That the lesions is small can be a good sign. Could possibly mean that he would be eligible for surgery. Sloan-Kettering is a highly recommended hospital and they do have experience with cholangio. Try looking there.
Good luck and keep us informed.
StacieJanuary 24, 2008 at 10:41 pm #1056
Hi everyone. I just found this site and I think it’s a great way to get information and support so I’m happy to be a part of it. My dad has a small blockage in the bile duct close to his liver and a small lesion in his liver. He feels well though. He actually went to the doctor for what he thought was acid reflux. They suspect cholangiocarcinoma. He will be getting a fine needle biopsy and then we will need to find a surgeon in the NY/NJ area. If anyone has any advice or surgeon suggestions, i’d really appreciate it.
Does anyone know if the prognosis is good if the lesion in the duct and the liver are small? I am just learning about this disease.
Looking forward to hearing from you.
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