Discussion Board Forums Introductions! Mom diagnosed with cholangiocarcinoma

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  • #45167
    shadow
    Member

    I don’t know where exactly the stent was placed. The diagram the doctor had drawn for my mother showed the tumour being on one side of the bile duct, but that was mostly just to explain it. As soon as I know who she is seeing at St-Luc (which after a little research I found out is part of University of Montreal hospital center; made up of three hospitals), I’ll let you guys know.

    Thanks again,

    Michelle

    #45166
    marions
    Moderator

    Michelle….did they place the stent beneath the tumor or, did the place it right through the tumor?
    Also, I had spoken with several physicians from Montreal however; I am not able to retrieve their names. I do believe though, that they were from Royal Victoria Hospital, McGill University Health Center, in Montreal.
    I am also hoping for others to come forward and share the names of the physicians in your area.
    Good luck and best wishes,
    Marion

    #45165
    shadow
    Member

    Hi all,

    Mom saw the oncologist today. He was even receptive to the idea of getting a second opinion (actually he seemed almost relieved as he said he did not know a lot about this cancer). He is sending her to St-Luc Hospital in Montreal (about 2 hours away from here) where they are doing cancer research and have a variety of clinical trial and the such. His proposition is that she sees someone there who will give their opinion on treatment and if the treatment options are available here, he will do them for her so she will not have to travel. She seemed very happy by this. Frankly, so am I. Even Dad (who has been taking all this even harder than Mom has) was optimistic to a certain extent. The doctor reminded her that is still stage 4 cancer and that we’re just biding time, but I’m not ready to give up.

    So I’m still going through all my information. Getting a headache from it. But I won’t give in without a fight.

    Thanks to all once again.

    Michelle

    PS – In response to Gavin’s question regarding the stent, it is a plastic one. They say it will eventually collapse under the pressure of the tumour.

    #45164
    shadow
    Member

    Thank you all so much for your support and all the information. I called the Canadian Cancer Society yesterday, and they also were able to give me some info (about 30 pages worth, I’ve got a lot of reading to do). Mom will see the oncologist tomorrow and hopefully this time he will be a little more compassionate than when they received the diagnosis. When I talked to Mom this morning, I told her about this site and how much help was so readily offered and how much love I felt right away on here. When I go to her place on Friday, I told her I will show her the site and set her up if she wished.

    I may be busy for a few days reading all my info and seeing what I can do to help Mom in her fight. But I will be back here as often as I can

    Thank you all one again. Keep up the good fight.

    Michelle

    #45163
    sara
    Member
    marions wrote:
    Hi Michelle….a hearty welcome from me also. Additionally, I wanted to post a link establshed by our members. It is ongoing and will continue to grow, as more members share the names of their treating physicians. Good luck.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
    Best wishes,
    Marion

    Marion’s link is a great resource. The Princess Margaret hospital in Toronto is doing a great deal of work on cholangiocarcinoma in Canada. Hopefully this is an option for you. Here are a few doctors, which are mentioned in the link Marion provided:

    mlodge
    Member
    From: Toronto, Ontario, Canada
    Registered: Thu, 04 Jun 2009
    Posts: 46
    IP: 99.233.36.112
    E-mailRe: Treatment Centers/PhysiciansI am at the Princess Margaret Hospital in Toronto.

    Surgical Oncologist is Dr Alice Wei 416-340-4232, Medical Oncologists are Dr Jennifer Knox 416-946-2399 and Dr Anne Horgan, and Radiation Oncologist is Dr Rebecca Wong.

    Thanks,
    Mel

    Last edited by mlodge (Tue, 08 Sep 2009 20:09:44)

    #45162
    drjcanady
    Member

    Michele you should inquiry @Toronto General Hospital.
    Dr Canady

    #45161
    marions
    Moderator

    Hi Michelle….a hearty welcome from me also. Additionally, I wanted to post a link establshed by our members. It is ongoing and will continue to grow, as more members share the names of their treating physicians. Good luck.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
    Best wishes,
    Marion

    #45160
    wdshotwe
    Participant

    Shadow, sorry to hear about your mom. My mom was diagnosed in July by mistake. She has had 2 chemoembolization procedures done at Hopkins with results. She has one large tumor that is inoperable and small ones in liver and backbone. She had a port put in today to start systemic chemo on Thurs and will also have cyberknife treatment to the back. It has been a rollercoaster but mom is taking it in stride and having amazing strength. I am fully appreciating my mom and cherisihing every moment with her. Cancer stinks, but how you fight it and the approach to life keeps us going. We laugh and cry alot.

    #45159
    gavin
    Moderator

    Hi Michelle,

    Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your mum. But I’m glad that you have joined us all here as you will get a load of support and help from us all. I know how you are feeling right now, I felt the same when my dad was diagnosed with inoperable CC, it felt like getting hit in the head with a bat. I’m sorry that I can’t help you with your request for info about doctors and treatment centres in Canada as I am in Scotland, but we do have members here from Canada and I know that they will be along soon to offer their experiences.

    I am glad to hear you say that you are looking into getting another opinion for your mum and I think that this is a good idea. And I hope that you can find a centre and doctor that is experienced in dealing with patients who have cholangiocarcinoma. We have a list of major treatment centres here on the website, but they are all in the USA and I don’t know how far away they are from you.

    http://www.cholangiocarcinoma.org/majorcancercenters.htm

    How is that stent working for your mum? And is it a plastic one or a metal stent? My dad had a metal stent. I too hope that your parents will realise their dream next summer. Please keep coming back here, we know what you are going through and we care.

    My best wishes to you and your mum,

    Gavin

    #45158
    slittle1127
    Member

    Michelle – Take a nap whenever you can. You have a lot on your plate and the only way to be good to others is to take good care of yourself. You need support right now and a healthy body. Our thoughts and prayers are with you. Blessings, Susan

    #45157
    jennifers
    Member

    I’m sorry Michelle – it’s a tough diagnosis to hear, but once a plan is in place, you will all get into a fighting mode and things WILL get easier.

    Where in Canada are you and your Mom? I’m in Calgary, and very happy with Dad’s oncologist… she does everything she possibly can to help Dad. There are also a few members from the Ontario area. I’m assuming you are also East, since your mid-morning nap was at about 7:30 my time! My daughter was 4 months old when Dad was diagnosed so I understand the lack of sleep as well… a nap is VERY deserved.

    Thinking of you and your family.

    Jen

    #45156
    shadow
    Member

    Thank-you all for your words of encouragement. It is much appreciated.

    I’m trying to find other doctors to get a 2nd opinion for Mom. She went to a nearby hospital to see someone in their cancer center, but was told that they can’t take her as she lives in another province. I’m going to try to call the Canadian cancer society later today.

    For now I’m heading to bed for a well-deserved nap. I have a 10-month old who is still not sleeping through the night and am taking care of my mother-in-law who is an Alzheimer’s patient. Between all this and Mom, I think I’m allowed a mid-morning snooze.

    Thanks once again to all of you,

    Michelle (Shadow)

    #45155
    jemima
    Member

    Hi Shadow

    My mum (78) was diagnosed with CC in Feb this year. She was deemed unsuitable for surgery by two surgeons (one in England and one in France), but we have not given up hope and are still in discussion with a third surgeon to see his opinion. She is currently having chemo (gemcitabine/cisplatin) and is tolerating it well with only minor side effects, and a recent scan showed that the tumour has not grown since July.

    What I am trying to say is find out as much as you can, get 2nd and 3rd and even 4th opinions and keep fighting for your mum. This cancer is very rare and many doctors have not seen it. Make sure that you get to see someone who knows about cc and that you feel happy with. It is important to have a doctor with the right attitude.

    Keep posting on here as this forum contains the best knowledge about cc, and has the most amazing group of people on it who will always be there to answer questions, give support or just lend an ear.

    I know that there are a few members on here from Canada so hopefully they will be along soon. If not then do a search as I am sure people have recommended places before.

    best wishes to you and your family

    Jemima

    #45154
    slittle1127
    Member

    I am so sorry for your mom’s diagnosis, but we are here for you. Keep posting and talking about what is going on – it can be such a blessing to get your thoughts and feelings out, especially with others who understand what you are going through. As Gavin always says, sorry you had to find us, but glad you are here. Blessings, Susan

    #45153
    mlepp0416
    Participant

    Shadow: I’ve been my husbands caregiver for almost three years.

    My advice to you would be to certainly seek a second opinoin.

    My husband did have a left lobe resection in June ’08 but had a re-occurance of the cancer in Nov. ’09, and that new tumor is inoperable. In Dec. ’09 the oncologist gave him 6 months “At the most”…..and told him that Chemo/radiation was not an option…well, here we are in Dec. ’10 and he is still here.

    No one has an expiration date stamped on their butt! All the doctors can do is ‘guess’ at what time one has left. Many doc’s have never encountered a case of CC.

    We got 2nd and 3rd opinoins they both disagreed with the first oncologist.

    Radiation killed the new tumor and he is now on IV Chemo. The first round was oral chemo.

    My advice would be to do all the research you can on CC. Read the posts on this board and write down all the questions you can think of. Seek those 2nd and 3rd opinoins. Try to find an oncologist who is familiar with CC. Never take no for an answer, instead ask What else can they try.

    Spend time with your Mom. When she is having a good day, ENJOY it. When she is having a bad day, just be with her and hold her hand if nothing else. Take lots of pictures and videos (You will be glad that you did). Watch TV with her, or read a good book to her!

    Please keep us posted on your mom. Feel free to post your thoughts and feelings on this site, as many of us do! Ask for advice, and others will give it freely.

    Welcome to the site that no one, myself included, really wants to join. But, trust me, you will be glad that you did!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

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