Extrahepatic bile duct cancer

lcarper2
lcarper2 Member Posts: 635 Member
edited March 2014 in Colorectal Cancer #1
Well I found online that is what I have and am ordering my medical records tomorrow and calling my ONC there is no dragging your feet room here this is bad stuff and needs to be addressed ASAP so I am getting on it Monday morning. If they don't move fast enough I will go some place else am not sitting around waiting for anyone to make up their minds as what to do with me.Just wanted to vent and give some info to others who may be having the same problem and not gone to the doc. yet. I called cancer treatment centers of america and not really suprised by what they told me but I am not able to go there because I am on medicare. anyway this to shall pass...
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Comments

  • papajedi
    papajedi Member Posts: 110
    #2
    Symptoms
    what were they and how was it diagnosed ?
  • msccolon
    msccolon Member Posts: 1,917 Member
    #3
    You go girl!
    FIGHT, FIGHT, FIGHT! Glad to see you are in major fighting mode. Praying for you, gal, kick some serious cancer a$$!
    mary
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #4
    Louann, I'm so sorry to hear
    Louann, I'm so sorry to hear this. Did you get the paperwork or did you just find this online? You'd said it was small cell, which usually originates in the lung, and yes, it's very aggressive... It's very rare in the colon.

    Praying for you!
  • geotina
    geotina Member Posts: 2,111 Member
    #5
    Louann
    I am sorry to hear this. Take a deep breath. You say you found this diagnosis on line if I understand your post correctly. Call your onc on Monday and find out if indeed, this is what it is. Is this a totally different cancer than colon or is it associated with colon cancer? Anyway I will be thinking of you and looking for a further post either here or on your caring bridge site.

    Take care - Tina
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #6
    geotina said:

    Louann
    I am sorry to hear this. Take a deep breath. You say you found this diagnosis on line if I understand your post correctly. Call your onc on Monday and find out if indeed, this is what it is. Is this a totally different cancer than colon or is it associated with colon cancer? Anyway I will be thinking of you and looking for a further post either here or on your caring bridge site.

    Take care - Tina

    cancer
    the cancer is on my liver bile duct and it is very rare stems from the cc I had and it spread it is not likley to go to the bile duct but to the liver or lungs it is very hard to treat chemo won't work on it only 3 ways to try to kill it if they can even do that it is so close to my pancres that they may opt to do nothing...the symptons were pain in my right back at my ribs
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #7
    dianetavegia said:

    Louann, I'm so sorry to hear
    Louann, I'm so sorry to hear this. Did you get the paperwork or did you just find this online? You'd said it was small cell, which usually originates in the lung, and yes, it's very aggressive... It's very rare in the colon.

    Praying for you!

    small cell
    only means a tumor less than 2 in. accross and they said mine was that...and because it is on my bile duct is why it is so rare
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #8
    lcarper2 said:

    cancer
    the cancer is on my liver bile duct and it is very rare stems from the cc I had and it spread it is not likley to go to the bile duct but to the liver or lungs it is very hard to treat chemo won't work on it only 3 ways to try to kill it if they can even do that it is so close to my pancres that they may opt to do nothing...the symptons were pain in my right back at my ribs

    I'm glad you're going to be on top of this tomorrow.
    Gosh I'm so sorry to hear this.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #9
    So sorry
    I will pray that you can get some good answers for this develoopment.

    *hugs*
    Gail
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #10
    papajedi said:

    Symptoms
    what were they and how was it diagnosed ?

    they
    did an enhanced MRI and found the tumor and a needle bio showed it was cancer the test were done to see if the is a throw off from my cc and it was I have very bad pain unless I take the morphin and my bile duct was being pushed in and they put a stent in to relieve the live and my jandice went away.
  • sfmarie
    sfmarie Member Posts: 602
    #11
    Louann
    Gosh, I do not know what to say. I do hope that this is something that can be taken care of surgically or some other procedure and snip, it is gone.
    My sister went for a consultation at CTCA and she loved it. Sadly, they had nothing they could offer her since she has failed all of her chemo options.
    Keep pressing for answers and keep fighting as hard as it is. I have been following your journey closely and pray for good news soon!
    You are in my prayers.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #12
    Actually Louann
    Small cell does NOT mean the tumor is small, Medicinenet.com dictionary say:

    The distinctions between small and non-small cell lung cancer is made by looking at the tumor under the microscope and is important for proper treatment. Also known as 'Oat cell cancer': A type of cancer usually found in the lungs and in which the cells are small, round and resemble oats. Also called small cell cancer.
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #13
    dianetavegia said:

    Actually Louann
    Small cell does NOT mean the tumor is small, Medicinenet.com dictionary say:

    The distinctions between small and non-small cell lung cancer is made by looking at the tumor under the microscope and is important for proper treatment. Also known as 'Oat cell cancer': A type of cancer usually found in the lungs and in which the cells are small, round and resemble oats. Also called small cell cancer.

    small
    they said at the hospital it was smaller than a pea so I figured that was pretty small in tumor language hope I am right still waiting on ONC to call left message this morning for a call back and called the hospital getting the release form faxed to me to get medical records and I can see for myself what was said...
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #14
    lcarper2 said:

    small
    they said at the hospital it was smaller than a pea so I figured that was pretty small in tumor language hope I am right still waiting on ONC to call left message this morning for a call back and called the hospital getting the release form faxed to me to get medical records and I can see for myself what was said...

    That IS small but you said ....
    You said they told you 'small cell'. There's a HUGE difference in a small tumor and small cell. Small cell usually kills within 3 months. Small tumors are kicked to the curb!

    Let us know! I'm a'praying!
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #15
    dianetavegia said:

    That IS small but you said ....
    You said they told you 'small cell'. There's a HUGE difference in a small tumor and small cell. Small cell usually kills within 3 months. Small tumors are kicked to the curb!

    Let us know! I'm a'praying!

    small cell
    carsonma is what they said in the hospital I have an apt tomorrow with ONC so will know more than
  • bdee
    bdee Member Posts: 304
    #16
    lcarper2 said:

    small cell
    carsonma is what they said in the hospital I have an apt tomorrow with ONC so will know more than

    Hope all goes well
    I hope your oncologist will fight with you on this and that you get all the answers you need.
    I, too, caledl Cancer Centers of America. They accepted my insurance, but not my kind of cancer. I've now been told by three doctors that with appendiceal cancer you treat it like colon cancer and hope the chemo works. I go on Wednesday for PET and on Friday for CT scan because my CEA has been going up since December.

    Good luck to you.

    Debbie in Arkansas
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #17
    lcarper2 said:

    small cell
    carsonma is what they said in the hospital I have an apt tomorrow with ONC so will know more than

    Uh, Oh
    Let's hope it is not this, LouAnn - will wait for your results tomorrow.

    It rang a bell when Diane mentioned "Small Cell Carcinoma."

    This is what my wife's Dad had - and it took him very quickly. He had been getting sick for a month or two. Then, he was fishing one Saturday and passed away a week later...very, very agressive and it's very hard to eradicate.

    I've done some preliminary research on the NCI website...and found this info that you can take to your oncologist for tomorrow's meeting:

    **********************************************************************************************

    Certain factors affect prognosis (chance of recovery) and treatment options.

    The prognosis (chance of recovery) and treatment options depend on the following:

    The stage of the cancer (whether it is in the chest cavity only or has spread to other places in the body).

    The patient’s gender and general health.

    The blood level of lactate dehydrogenase (LDH), a substance found in the blood that may indicate cancer when the level is higher than normal.

    For most patients with small cell lung cancer, current treatments do not cure the cancer.

    If lung cancer is found, participation in one of the many clinical trials being done to improve treatment should be considered. Clinical trials are taking place in most parts of the country for patients with all stages of small cell lung cancer. Information about ongoing clinical trials is available from NCI Web site

    The following stages are used for small cell lung cancer:

    Limited-Stage Small Cell Lung Cancer

    In limited-stage, cancer is found in one lung, the tissues between the lungs, and nearby lymph nodes only.

    Extensive-Stage Small Cell Lung Cancer

    In extensive-stage, cancer has spread outside of the lung in which it began or to other parts of the body.

    Recurrent Small Cell Lung Cancer

    Recurrent small cell lung cancer is cancer that has recurred (come back) after it has been treated. The cancer may come back in the chest, central nervous system, or in other parts of the body.

    I'm hoping that there is some miscommunication here - Kim's dad died in the 3-month period that Diane described - his was in the lung - we don't know if had colon cancer, if he did, none of us knew about it...I know this will all be straightened out tomorrow.

    Holding our collective breaths right now...

    -Craig
  • dmdwins
    dmdwins Member Posts: 454 Member
    #18
    Sundanceh said:

    Uh, Oh
    Let's hope it is not this, LouAnn - will wait for your results tomorrow.

    It rang a bell when Diane mentioned "Small Cell Carcinoma."

    This is what my wife's Dad had - and it took him very quickly. He had been getting sick for a month or two. Then, he was fishing one Saturday and passed away a week later...very, very agressive and it's very hard to eradicate.

    I've done some preliminary research on the NCI website...and found this info that you can take to your oncologist for tomorrow's meeting:

    **********************************************************************************************

    Certain factors affect prognosis (chance of recovery) and treatment options.

    The prognosis (chance of recovery) and treatment options depend on the following:

    The stage of the cancer (whether it is in the chest cavity only or has spread to other places in the body).

    The patient’s gender and general health.

    The blood level of lactate dehydrogenase (LDH), a substance found in the blood that may indicate cancer when the level is higher than normal.

    For most patients with small cell lung cancer, current treatments do not cure the cancer.

    If lung cancer is found, participation in one of the many clinical trials being done to improve treatment should be considered. Clinical trials are taking place in most parts of the country for patients with all stages of small cell lung cancer. Information about ongoing clinical trials is available from NCI Web site

    The following stages are used for small cell lung cancer:

    Limited-Stage Small Cell Lung Cancer

    In limited-stage, cancer is found in one lung, the tissues between the lungs, and nearby lymph nodes only.

    Extensive-Stage Small Cell Lung Cancer

    In extensive-stage, cancer has spread outside of the lung in which it began or to other parts of the body.

    Recurrent Small Cell Lung Cancer

    Recurrent small cell lung cancer is cancer that has recurred (come back) after it has been treated. The cancer may come back in the chest, central nervous system, or in other parts of the body.

    I'm hoping that there is some miscommunication here - Kim's dad died in the 3-month period that Diane described - his was in the lung - we don't know if had colon cancer, if he did, none of us knew about it...I know this will all be straightened out tomorrow.

    Holding our collective breaths right now...

    -Craig

    Lets not
    Lets not jump to conclusions or scare the crap out of her until Louann sees her onc. She stated that her biopsy said it was related to the colorectal cancer which would then not be small cell LUNG cancer. Small cell cancer does not only have to be from the lung.

    Thinking of you and praying Louann.

    Dawn
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #19
    dmdwins said:

    Lets not
    Lets not jump to conclusions or scare the crap out of her until Louann sees her onc. She stated that her biopsy said it was related to the colorectal cancer which would then not be small cell LUNG cancer. Small cell cancer does not only have to be from the lung.

    Thinking of you and praying Louann.

    Dawn

    it is
    not in my LUNGS it is on the liver bile duct and I was told it is sm cell carcinoma by the doctor in the hospital and that the tumor was smaller than a pea which means nothing at all I go tomorrow and find out what is going on and deal with it than . Thank all of you for your support
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #20
    lcarper2 said:

    it is
    not in my LUNGS it is on the liver bile duct and I was told it is sm cell carcinoma by the doctor in the hospital and that the tumor was smaller than a pea which means nothing at all I go tomorrow and find out what is going on and deal with it than . Thank all of you for your support

    I'm Sorry, LouAnn and Dawn
    Looks like I blew it - I have misinterpreted what you were trying to say and jumped the gun too quickly.

    I saw small cell and thought of Kim's dad - so I'm sorry If I upset you in any way - you know that is never my intent. I was just scrambling to get you some info, but you've already got a good handle on it - I should have just breathed deep and waited this one out.

    Thanks too, Dawn, for the insight that small cell can be somewhere else in the body - it's always good to learn something new and I appreciate that info.

    This has bothered me all day and I need to sleep a little bit tonight, so just wanted to apologize if I hurt either of you gal's feelings.

    I do look forward to hearing what the situation is tomorrow after your meeting.

    I'm hoping that all goes well for you and that something can be done.

    -Craig
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #21
    Sundanceh said:

    I'm Sorry, LouAnn and Dawn
    Looks like I blew it - I have misinterpreted what you were trying to say and jumped the gun too quickly.

    I saw small cell and thought of Kim's dad - so I'm sorry If I upset you in any way - you know that is never my intent. I was just scrambling to get you some info, but you've already got a good handle on it - I should have just breathed deep and waited this one out.

    Thanks too, Dawn, for the insight that small cell can be somewhere else in the body - it's always good to learn something new and I appreciate that info.

    This has bothered me all day and I need to sleep a little bit tonight, so just wanted to apologize if I hurt either of you gal's feelings.

    I do look forward to hearing what the situation is tomorrow after your meeting.

    I'm hoping that all goes well for you and that something can be done.

    -Craig

    hey
    you could ever hurt my feeling and I have scared my self to death reading about this stuff it is very rare and spreads fast so I will talk to the doc tomorrow and go from there please don't loose any sleep everyone has thought it was some where else and that is because this is very rare to get it where I have it...

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