Grandma’s CC and Bad Stent

Discussion Board Forums Introductions! Grandma’s CC and Bad Stent

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #92100
    katrina
    Spectator

    Please get references for a far more experienced doctor. I believe that they are specialists in GI departments. Recommend of going with the same doctor. Mine does it with some kind of viewable ct at the same time to see everything inside. My first plastic Stent lasted 2 months. When that is blocked, you get lots of side effects including extreme fatigue and chills. 2nd Stent was a bit too short and lasted only 2 weeks. I researched and found that plastic covered metal stunts are safe and last up to 8 months. You both Wil feel safer in the hands of a truly experience doc with the latest eqipment,highest sanitary standards, and confidence. Ask any doctor candidate how many they have done, percentage of complications, and what they think about lplastic covered metal stents. (NOT JUST METAL STENTS) I am definitely a grandmother’s age too.

    #92099
    marions
    Moderator

    Alecia……..I too would like to welcome you to our site and totally agree with Lainy and Debbie in that you should search out a center treating a high volume of biliary cancer patients. Obtaining second professional is considered standard of care and rare cancers demand expert opinions. This is particularly true as replacement of the current stent causes some concern with the treating physician.
    Does your grandma have insurance? If so, then you would want to investigate out of network coverage with either Sloan Kettering or NewYork-Presbyterian Hospital/Columbia University Medical Center. Debbie mentioned a multidisciplinary team approach, which is offered at either center.
    Prior to leaving for vacation you would want to download the biliary emergency card from our website. Please don’t leave home without it: http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Daily temperature reading should not exceed 100.5 F.
    It is important to have copies of your grandma’s medical records on hand. She must sign a requisition for release of her records from the treating hospital.

    Please stay in touch, we are in this together.

    Hugs
    Marion

    #92098
    debnorcal
    Moderator

    Dear Alicea,

    Welcome to our group of knowledgeable and caring patients, caregivers and friends. I am so sorry that your grandmother is dealing with cc. I know that this is a very scary time for you, but you will get through it, one day at a time. Lainy is so right that this will be a long ordeal for you and you need to take care of yourself in order to be strong and a good advocate for your grandmother. And, despite all of the negative information and statistics you have undoubtedly read, you really can’t know what lies ahead for your grandmother. Every patient’s particular cancer biology is different and their responses to various treatments can be quite different as well. My husband’s bile duct cancer was quite advanced when diagnosed (hilar stage 3B). And he was told repeatedly that it was inoperable. His prognosis was grim and I truly didn’t think he would survive long. I was so sad and worried, for him, for myself and for our children. I joined this discussion board and began reading as much as I could about people’s similar experiences and it was so very helpful to have access to a wealth of information and support. I initially resisted the suggestions to get a second opinion from a Cholangiocarcinoma expert, because we were confident in our doctors medical experience. It took a while to realize how critical it is to be treated by a top medical center that handles many such cases. They are the folks that have their finger on the pulse of the latest treatment options/research. We eventually south several second opinions from such top centers and my husband had a resection and is now 15 months cancer free. (You can read my prior posts or I can email you a summary.). My point is, we can’t just assume the worst or spend our time worrying about “what ifs”.

    In your grandmother’s case, it sounds to me that she is very fortunate that it was found at an early stage and that she is feeling relatively well. You didn’t mention what about the tumor location makes it inoperable, but generally, at stage 2, there are more options than at later stages. I hope this is the case for your grandma. I would strongly advise you to seek out one or more second opinions. There are a number of great choices on the east coast. You want one that uses a multidisciplinary team approach, so that input is received from the medical oncologist, surgeon, radiologist etc.

    Regarding the stent issue, it sounds like the stent has been for approximately 6 months, which is really stretching it’s useful life. If an infection develops, she can very quickly become very ill and need to be hospitalized immediately. If you decide to take her on vacation this week, minimally, I would pack Tylenol, a thermometer, and the patient care card available on this website so that you can be alerted to an oncoming infection at the onset, and so that it can be explained to a community hospital admitting Doctor that may never have heard of cc. I would also set up an appointment for a stent exchange before you leave so that it can be done quickly upon her return.

    I hope this is helpful. So many of us have been in shoes similar you yours, and we u dears tank how difficult this is and we are here to provide comfort and guidance. Please keep us posted.

    Debbie

    #92097
    lainy
    Spectator

    Dear Alicea, I am so sorry to read about your Grandma but you have come to the right place to get CC support and to come into a warm and wonderful family. My thinking is, if she did get the first stents inserted these should be no different. I have not heard of that hospital but you want to make sure they are experienced with CC. I would also let them know that you want an extremely experienced person to do the stent exchange. Plastic stents were also inserted for my husband and they do need to be changed at least every 2 – 3 months or terrible infections can set in. We are also big believers in 2nd and 3rd opinions. Very important so that you never look back and think what you could have done. So, experience and other opinions at the top of the list. Now, for yourself you might ask your own doctor for something to take the edge off for you. This will be a lengthy journey and Grandma needs your strength. Patients are pretty smart and can tell when we are upset and then they feel so bad for us. You never know how strong you are until “strong” is the only choice you have! Below is a site you may find helpful and please do keep us informed as you are not alone in this anymore. And please take care of you!

    http://cholangiocarcinoma.org/newly-dx/

    #12371

    Hi all,

    My grandmother was diagnosed this past fall with CC. It is small and caught early (around stage 2) but is inoperable due to it’s location. She’s done chemo and radiation, and is now on a chemo pill. They will re-test her in a few weeks/months but initially tested after chemo and looks like things were quite shrunken.

    What’s worse is her stent. That is my worry right now. More than the cancer. She had had a plastic one put in (temporary) before they know if her cancer was operable or not. Let me backpedal and say that her bile duct is extraordinarily tiny. Prior to diagnosis (the year before, last year, she had been in the hospital with increased enzymes and a very very very diseased gallbladder that needed to come out. When they did an ERCP, they perforated her bile duct and she was hospitalized and it was a very big deal. It made her very ill.

    Apparently, it was very hard to get the stent in. The doctor had previously said though it was temporary, he wanted to leave it in and hope it would stay as long as possible as it was so hard to get in her duct the first time, and would be risky/very hard to get another in – he wasn’t confident. Additionally, as I understand it she can’t get on without a stent.

    I’m extremely nervous. We are going on vacation on Thursday this week and they want to do the replacement stent when she is back. I am so nervous.

    Still nervous about the cancer, how the treatment will continue to work.

    She is more her spunky self than she was during treatment, but still weak. Honestly nervous for her to have any type of surgery.

    She has lived with me almost my entire life and helped raise me. I am only just short of 23, she is turning 73. I fear she won’t be well, or god forbid will not be here in the next few years – my boyfriend and I have plans to be engaged and married within the next three to five years and I cannot fathom doing that without her. I can’t imagine doing much of anything without her. I am riddled with near crippling anxiety and this has made it hard to even sit here at my desk at work.

    I am sorry for all of you but have had fel tbetter reading your posts silently the last few months.

    But with this new struggle, I had to reach out. Introduce myself. And hope someone has had a similar experience. Anyone?

    BTW she is being treated at Winthrop Research Hospital in New York.

Viewing 5 posts - 1 through 5 (of 5 total)
  • The forum ‘Introductions!’ is closed to new topics and replies.