Discussion Board Forums General Discussion Questions regarding surgery

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  • #31173
    hollandg
    Member

    Irene
    That’s an invaluable piece of advice for anyone using this site – thanks Ger

    irenea wrote:
    Hi —
    Just some info from personal experience about the surgery. The more opinions you get, the better — there are some docs who are much more willing to be aggressive with difficult tumors than others. That being said, there are, unfortunately, many many reasons why surgery cannot work or even when it fails (as it did in my case.) In my case the primary tumor is wrapped around the portal vein, and the chances of removing the tumor without damaging the portal vein — which is necessary to sustain life — is slim. They are ways to “create” things like portal veins, but they are terribly risky and not too dependable (although things are always improving.)
    There is also the concern over the size of the tumor and if it intrahepatic, how much liver needs to be removed. While the liver can amazingly essentially regrow itself, it CANNOT regrow the vital veins and arteries that get removed during the surgery, so the liver does not ever function normally again in many cases.

    Anyway — don’t mean to be grim, but wanted to share my own experiences. There are many of us on the board who went in for surgery and woke, only to find that the surgery failed.

    Take care,
    Irene

    #31172
    marions
    Moderator

    Mel…thanks for posting this. Would you mind and adding the names to the list I am trying to establish? I will pull it up again? Thanks so much. This information is invaluable for others seeking out the help they need with physicians familiar with this cancer.
    Thanks again and as always, my best wishes coming your way,
    Marion

    #31171
    marions
    Moderator

    Raye….congratulations all around; for you doing so well, and your wonderful daughter, who has given the gift of life to you and your grandchild Syney Olivia. What a remarkeable family you are. Have a safe trip and please, stay in touch.
    Best wishes,
    Marion

    #31170
    raye
    Member

    Hi friends,

    I just sent Lee an e-mail in hopes she will respond soon.

    As a side story, Helen and I will be heading to Toronto next week to see Sydney Olivia Krell, our third and newest grandchild born Sept. 3 at 8:15 am to Jennifer and Jason Krell. If you know my story Jennifer is my oldest daughter who was my live donor for the CC liver transplant I had on March 20, 2008.

    Mom and daughter are both at home and doing fine. Grandma and Papa Krell live right next door enjoying every moment. Unfortunately I’m in
    Indiana working, but Grandma and Papa Field will be headed to Toronto this weekend to see this new person in our lives.

    I’m glad I’m here for this.

    Raye

    #31169
    luluu
    Participant

    Lee,
    The whipple surgery is also an option for extrahepatic CC. A tumor can form is any part of the bile duct and depending on where it is will determine the course of action.
    What I didn’t realize, initially, when my husband was diagnosed is that the bile duct runs from inside the liver to the intestines, so if the tumor is inside the liver bile duct (intrahepatic), the surgical option is different then if the tumor was is the lower part of the bile duct(extrahepatic)–and that is when the whipple procedure is an option.
    The bile duct runs through the pancreas–that’s why the whipple is used for tumors in the distal bile duct and the head of the pancreas( pancreatic cancer).
    It was very confussing to me at the very beginning, I kept reading about liver transplants for CC but couldn’t understand why not for my husband until I started asking lots more questions to the doctors and insisting on clear answers.
    I carried around a note book where i wrote everything down and even jotted down questions when they popped into my head.

    Hope this helps!

    #31168
    mlodge
    Participant

    Hi Lee,

    My name is Melanie, I am being seen at Princess Margaret Hospital. My first encounter was with Dr Alice Wei – she works directly with Dr Cleary. Her number is 416-340-4232. Upon my very first appt with her, she actually admitted me to the hospital because my jaundice was so bad. She is a most compassionate woman. She was hopeful that surgery would be an option for me, but my tumour has surrounded my hepatic and portal veins and arteries. She referred me to the medical oncologist Dr Jennifer Knox who is trying to shrink the tumour with chemo – challenges with this one too.

    I understand that Credit Valley is probably close to home for your family, but trust me – for this disease your family needs to go to Princess Margaret.

    All the best,
    Mel

    #31167
    irenea
    Member

    Hi —
    Just some info from personal experience about the surgery. The more opinions you get, the better — there are some docs who are much more willing to be aggressive with difficult tumors than others. That being said, there are, unfortunately, many many reasons why surgery cannot work or even when it fails (as it did in my case.) In my case the primary tumor is wrapped around the portal vein, and the chances of removing the tumor without damaging the portal vein — which is necessary to sustain life — is slim. They are ways to “create” things like portal veins, but they are terribly risky and not too dependable (although things are always improving.)
    There is also the concern over the size of the tumor and if it intrahepatic, how much liver needs to be removed. While the liver can amazingly essentially regrow itself, it CANNOT regrow the vital veins and arteries that get removed during the surgery, so the liver does not ever function normally again in many cases.

    Anyway — don’t mean to be grim, but wanted to share my own experiences. There are many of us on the board who went in for surgery and woke, only to find that the surgery failed.

    Take care,
    Irene

    #31166
    marions
    Moderator

    Lee……yes, I do believe that you should search out another opinion in Toronto, at Princess Margret Hospital.
    Laura A Dawson, MD FRCPC
    Associate professor,
    Dept. of Radiation Oncology,
    Princess Margaret Hospital
    University of Toronto
    Toronto, Ontario
    phone 416-946-2125
    fax 416-946-6566
    and Dr. Sean McCleary….I don’t have his number and address available at this moment however, he is at the same Hospital. I will forward the information if you can’t reach him.
    And, stay hopeful.
    Best wishes coming your way,
    Marion

    #31165
    devoncat
    Participant

    There are many reasons why a tumor is unoperable.
    The location. It if is wrapped around or infiltrated majpr veins or arteries is on example. Also if it is so large that there will not be enough bile duct tissue lelf to reattach during surgery. If the cancer has invaded all lobes of the liver. If there are metastesies. From what my doctor said, if they cant get it ALL then you cant have surgery.

    Kris

    #31164
    lainy
    Participant

    A Whipple does not mean pancreatic. Teddy had a Whipple 4 years ago and they had to cut the head of the pancreas to get to the cancer in his bile duct valve, but there was no cancer in the pancreas. Have you tried our search engine at the top of the page? Where is the cancer located? Why are they talking Whipple and yet the doctor says, no surgery? Guess we need a little more information.

    #2652
    desperatelee
    Participant

    Hi all. Thanks for your answers and support. At least I have my head together enough now to start thinking and asking. Could anyone clarify the following for me, as I cannot find good information in the literature.

    1. What criteria get used for determining the operability of CC? We have only been told that it is not operable, but the medical oncologist did say she would “run it by” the surgeons. Not sure that is acceptable…

    2. I have seen references on this site to Whipple surgery, but when I google it I can only find it as it relates to pancreatic cancer.

    3. We are located near Toronto in Ontario, Canada. Dad has been sent to the Credit Valley Hospital/Peel Regional Cancer Centre. Is there anyone familiar with CC in this geographic area that we should be seeking out for a second opinion?

    Thanks again.
    Less desperate and more hopeful Lee

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