Not a candidate for surgery

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  • September 14, 2015 at 11:37 pm #89712
    suggi
    Member

    Middlesister1
    Thank you so much for the information. I will keep it. Am hoping when the doctor emails me he will explain everything further so I know exactly what is going on. I have many quyestions but because he had just seen the CDs himself he did not want to offer much information.

    Sigh, I know he could not offer more info at the time but the suspense is horrible if you know what I mean. The only thing he was clear on was that there was no surgery for me.

    Thanks again. It is so nice to have somewhere to go where it is almost like an extended family — you all understand and here I can vent where I do not feel I can to my friends and family. Hubby understands but I can not keep telling him about the knot in my stomach.

    Thank you again so very much.

    Steph

    September 14, 2015 at 9:24 am #89711
    middlesister1
    Moderator

    Steph,

    My mother had one tumor and it had not spread, but the location made it that they could not surgically remove. She had 3 cycles of GEM/CIS and then she had two treatments with the Y90 radioactive spheres (SIRT). Also, two weeks before and after the 2nd SIRT treatment, she took xeloda to enhance the response of the tumor to the radiation.

    Best wishes,
    catherine

    September 14, 2015 at 3:23 am #89710
    suggi
    Member

    Middlesister and Lainey thatnks for respondin

    Middlesister could you tell me what your Mom was on that put her in remission. I would really like to know.

    There is absolutely no hope for surgery at any point – I presume it is mostly about my weight as you lose quite a bit from a Whipple and that is the only one that would work on the common bile duct. Actually, the doctor was very vague, he just said there are medications – maybe to not frighten me until he reviews everything. He said he communicates via email and is having his radiologist look at the DVDs we brought to confirm his findings. I am not even positive it is out of the precancerous state and now cancerous. I got the impression that it could block the bile duct at any moment? so I guess the size is a problem. He kept asking me about pain and so far I do not have any right sided pain but he indicated if I do get any to go right in..

    After I hear from him I will try to get a 2nd opinion. Guess the next question for the board is are there any good doctors in the MA area or a little further.

    Just for my infor though I really would like to know what your Mom was on. Even if it really was a miracle and not the meds that put her in remission I would like to just bring the name of the med up when speaking to the doctor. It may not work in every case so I could be the one it does not work on but at least I had a voice in my care.

    Thanks again and anxiously awaiting that med name.

    September 13, 2015 at 2:44 pm #89709
    middlesister1
    Moderator

    Dear Steph-

    I guess I should not respond to posts at 530 in the morning. Please forgive my thinking that this was your first time introducing yourself.
    Take care,
    Catherine

    September 13, 2015 at 2:11 pm #89708
    lainy
    Spectator

    Dear Steph, wish I could say it is wonderful seeing you again! But you know what I mean. Yes CC is a scary one as it certainly is NOT a household word! I am wondering if you have ever sought out a 2nd opinion as we truly believe in 2nd and even 3rd opinions especially because of your whole situation. Different Doctors see things well, differently. I remembered the breast cancer as my Sister also had scoliosis and then breast cancer. You are a huge survivor and no reason in today’s world you can’t come out a survivor again! Hopefully your “team” will come up with a treatment plan when you are finished with all the testing. Wishing you the very best as always and please do keep us updated as we truly care. Still good to see that Suggi again!

    September 13, 2015 at 9:44 am #89707
    middlesister1
    Moderator

    Dear Suggi,

    Welcome to our group. I’m so sorry that your again facing a cancer diagnosis, but hoping that you can beat this one too. My mother was diagnosed in Oct 2013, could not have surgery, but is considered in remission now (a term her first doctor said did not happen with this cancer ) and looking forward to a trip to Mexico next month. There is hope. Most post their first time under introductions, so if you copy your post there, more members may see it.

    Most important is to be at a hospital that has a team who are very experienced. Where are you being treated? We’ve also had members who were first told no surgery, but then after a second (or even third) opinion, had successful surgery,

    Great place to start for more info is the Homepage under Newly Diagnosed. It will give an overview on treatment options.

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

    I would also suggest reading the second “sticky” topic entitled Introduction/Welcome on the Intro board.
    http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=18

    Keep in touch and let us know how you are.

    Best wishes,
    Catherine

    September 13, 2015 at 6:18 am #11693
    suggi
    Member

    Not sure what board to be on but what are the options for common bile duct cancer if you are not a candidate for surgery. They have not gone into detail but I believe it is because I am only 108 lbs normally and 5′ 4″ and have other medical conditions.

    I beat breast cancer in 2001 but really scared about this one. I also have IPMN cysts on my pancreas head that are not related. So far not much info. More testing to follow.

    Any advice and information about the common bile duct would be appreciated.

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