Discussion Board Forums Introductions! Newly Diagnosed

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  • #33104
    ashley
    Participant

    Welcome to the site and I’m very sorry to hear about your wife. It may help if you can provide us with more information ( tumor size, type ( Klatskin?), etc. ) and we may be able to provide you with more information.

    My mother is potentially in the process to receive a liver transplant for CC. The transplant protocol follows strict guidelines, mainly tumor must be under a certain size and has not metasticized to other areas. I encourage you to look into this avenue first. There are only a small number of hospitals in the US that do this. IF ( big IF) successful the long term survival with transplant is generally better than resection.

    You can search under this site for Mayo protocol and I believe Wayne Parsons had a great summary of the protocol.

    Additionally, if it has not already been done, please do not have them biopsy your wife’s tumor with a needle. I now know of two individuals who were denied transplant because the CC had seeded at the site of the biopsy needle. Many doctors have not dealt with this cancer enough to know this. CC is generally diagnosed through a combination of factors, ie: visible tumor on a CT scan, CA 19-9 blood number over 100 and/or FISH staining on the ERCP brushings for poly and trisomy mutations.

    I know of one young man going for a transplant this month at a Chicago hospital for CC. ( I think you are in Illinois?) If you would like more information ( his doctors, hospital, etc) please contact me at ajackson0@snet.net and I will try to pass along all of the info that I can.

    Lastly, my advice is to get MANY opinions prior to making your decisions. This is not an everyday cancer and unfortunately for the victims and caregivers that means that you have to really search for someone experienced to treat this disease. Where one doctor may resect, another may not.

    My best to you and your wife.
    Ashley

    #33103
    lalupes
    Participant

    My sister’s cc is inoperable, too – apparently the tumour isn’t particularly big, but it’s wrapped round an artery. I wish your wife every success possible with her treatment & send my best wishes to you both.

    Julia

    #33102
    gavin
    Moderator

    Hi there,

    Welcome to the site, although I am sorry that you have to be here. I can’t help you with your question regarding surgery as my dads CC is inoperable, but I just wanted to join the others in wlecoming you here. I hope you will stick around and as you will get a load of help and support from everyone here.

    I wish you and your wife my very best wishes.

    Gavin

    #33101
    scarman2009
    Member

    I think I may be able to answer at least one of these questions, though you should always keep in mind that your actual mileage may vary and all people will have different results based on their attitude and overall health.

    I just had my resection in June of this year (2009). They took 40% of my liver, my gall bladder, the bile ducts and one lymph node. Due to the location of a tumor on my liver that was close to critical arteries/veins they had to due an incision from the tip of my sternum to my belly button, they were unable to perform the process orthoscopically (sorry I can’t spell). I spent 5 days at Stanford Medical Center in Palo Alto California for this procedure.

    Day 1 I spent mashing the green button for pain meds.
    Day 2 I began walking laps in the hospital toting two IV cart thingys.
    Day 3 I was walking multiple laps with one IV cart.
    By day 5, I was still doped up, but moving very well under my own power.

    My surgeon had indicated that I would be in great shape in 6 weeks.

    It took me one week at home to be able to sleep through the night. I had a reaction to my pain med that made things really rough the first week home. Once I quit the oxicodone (night mares big time), I was an overnight success story.

    It was about 6 to 7 weeks later that I was able to lift laundry, ride a bicycle, get up from the couch without groaning and even got my driving privileges back. It has been 6 months now, and I still get a gentle reminder every now and then that I had major surgery a very short time ago.

    gtm2009 wrote:
    My wife was diagnosed with cholangiocarcinoma last Friday. We are in the process of talking to oncologists at Dekalb Medical Center and at Emory Hospital to determine the next step.

    Here are some questions we have so far:
    1) Assuming a resection is possible in her case, how long does it take to “recover” from the surgery. (We’re waiting on an MRI/MRA appointment).
    2) Is resection really a “cure” since I’ve read it can reoccur after the liver regenerates <- That's amazing, and apparently it regenerates quickly
    3) I am leaning towards the facility at Emory for her since it is a National Cancer Institute Designated Cancer Center. Has anyone else had any experience with the doctors and surgeons at Emory?
    4) If resection is a “cure” why do people have radiation/chemo done after surgery?
    5) We were told that radiation was not an option because of the possible damage to the healthy part of the liver. However I read that other people have had radiation treatments for this cancer. What’s the real story?

    #33100
    lainy
    Participant

    Hello GTM and welcome to our world. My husband’s surgery was different, it was in his bile ducts and he had a Whipple 4 years ago, but I just wanted to give you a big hello. I am sorry you had to find us but so glad you did. When you first hear the diagnosis you say what? Never heard of it in my life. Then you start researching and finally the fight to win takes over the feelings of helplessness.
    Sounds like your wife has a really good advocate in her corner and that certainly helps. Wish I could be of more help but you have come to the right place. Please keep us posted and ask as many questions as you need to, we have some pretty caring and brilliant people here in our CC Family.

    #33099
    devoncat
    Participant

    Welcome to the site!
    Yes, it is amazing your liver grows back. I wish my brain cells would.

    The cancer does often come back after resection, but not always. Our Sue is almost 3 years cancer free after her surgery.

    I was in the hospital for almost 2 weeks after surgery went home and then had to go back because of an infection. I was doing most stuff about 6 weeks after surgery. I felt almost normal about half a year after surgery. It took me quite awhile to build my strength back up. I have never been the “same” after surgery, but almost. I have needed more sleep and I get tired more quickly.

    I did not have chemo after surgery. I asked for it, my surgeon wanted it,but there was a mix up in my transfer. I was moving between Scotland and Sweden at the time. Now that my cancer has returned I wonder if I had chemo after surgery, would things be different now. Because I am the type of person who needs to know that I have done everything possible, I wish I would have had chemo after surgery.

    Kris

    #33098
    marions
    Moderator

    Hello and welcome to our site. I believe that you already are contemplating the right steps in searching for centers familiar with this disease. Several of our members have been treated at the Emory Cancer Center. I am hoping for some to come forward and pass on to you the names of their physicians. You may also want to use the search function and pull up some of their postings. (Top, right hand side,

    #33097
    gtm2009
    Member

    Also, I would like to know how “aggressive” this type of cancer is? How long does it take before the entire liver is cancerous?

    By the way, this cancer appears to be localized to her liver. All other catscans have come back normal.

    #2909
    gtm2009
    Member

    My wife was diagnosed with cholangiocarcinoma last Friday. We are in the process of talking to oncologists at Dekalb Medical Center and at Emory Hospital to determine the next step.

    Here are some questions we have so far:
    1) Assuming a resection is possible in her case, how long does it take to “recover” from the surgery. (We’re waiting on an MRI/MRA appointment).
    2) Is resection really a “cure” since I’ve read it can reoccur after the liver regenerates <- That's amazing, and apparently it regenerates quickly
    3) I am leaning towards the facility at Emory for her since it is a National Cancer Institute Designated Cancer Center. Has anyone else had any experience with the doctors and surgeons at Emory?
    4) If resection is a “cure” why do people have radiation/chemo done after surgery?
    5) We were told that radiation was not an option because of the possible damage to the healthy part of the liver. However I read that other people have had radiation treatments for this cancer. What’s the real story?

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