I may be a new member of the club

Discussion Board Forums Introductions! I may be a new member of the club

Viewing 15 posts - 1 through 15 (of 22 total)
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  • #43472
    isaac-1
    Member

    I just thought I would share the latest on my health roller coaster , as I last mentioned the spyglass ERCP biopsy came back negative, although they still think there is a good chance it is cancer, but will not know for sure until they get in and cut it out. (Whipple like operation, how much they have remove will be determined when they get in best case it will just be some of the duct, it may also include head of the pancreas or even part of the liver. I had some gallbladder flare up last week, and had a surgical consult and CAT scan Tuesday, which found I had a highly inflamed and possibly perforated gallbladder, so they instantly admitted me to the hospital and the next morning put a drain tube into my gallbladder, so now I am laying around in a hospital room with IV antibiotics, surgery scheduled for next Friday, with luck I will get to go home for 3-4 days before the surgery, depending on if they can convert me over to oral antibiotics.

    Ike.

    #43471
    jathy1125
    Spectator

    Ike-I was told after my ERCP that my bioposy would come back negative and it would be a false negative, which it did. My bioposy was sent to the Mayo Clinic for a final diagnose, I had stage four inoperable CC, just as they had predictated. My doctor was very educated about CC and that saved my life.
    Keep hanging around and asking as many questions as you can!
    Lots of prayers-Cathy

    #43470
    gavin
    Moderator

    Hi Ike,

    As Lainy says, you keep hanging around here as long as you want to. No one minds if you do that at all. And if you have any questions, then ask away and we’ll do what we can to help in trying to answer them.

    Best wishes,

    Gavin

    #43469
    lainy
    Spectator

    Ike, guess it’s kind of a good new bad news thing. The surgery they are talking about is that a Whipple? That is what my husband had 6 years ago. Guess I still don’t understand why they want to do surgery if they say it is not Cancer. Mmmm Listen, you hang here as long as you want and besides we need to hear the next chapter of your story!

    #43468
    isaac-1
    Member

    The biopsy results came in today as non-malignant, we have only talked to the doctor’s assistant so don’t know the details yet. After the ERCP last week the doctor told my wife that he wanted to refer me to a surgeon to have a bile duct resection to remove the growth as well as have my gallbladder removed regardless of the outcome of this biopsy, so it looks like I am still on a course to have somewhat risky surgery. It was also noted that a negative biopsy does not rule out early stage cancer, and that often these tumors are precancerous. Anyway I am now awaiting more news, and see where we go from here, it has been a long 6 days of waiting. I hope no one minds if I hang around here, ask some questions, etc. as even if I am not a member of the club, there is likely some relavent crossover information.

    Ike.

    #43467
    marions
    Moderator

    Percy…..Thank you for your diligence; you must know that you are irreplaceable. But, first and foremost; you need to get some rest. We know to re-post our questions to you if so necessary.
    Take care and thanks again.
    Marion

    #43466
    marions
    Moderator

    Ike….I have seen a T-shirt with the inscription: CANCER SUCKS. I couldn’t agree with it more.

    This cancer occurs in about 2 people per 100 thousand in the US. A physician at one of the medical conferences I had attended spoke of this cancer’s global occurrence to be closer to 3 percent of all cancers. If that is true than I don’t believe it to be as rare as it is made out to be.

    But we have seen some great responses to treatments in regards to a resection, chemotherapy, and radiation, or a combination of all. There is no reason to believe that you don’t belong in to this group. Therefore, dear Ike, first you cry (or kick a wall) and then you fight.

    We will help you along. You can count on it.
    All my best wishes,
    Marion

    #43465
    lainy
    Spectator

    Ike, I really know where you are coming from. My husband Teddy was 3 years in to his fight with CC and I developed a rare cancer called a GIST tumor. Had it surgically removed and is now watched by our ONC as if I had CC. PETS twice a year and every 3 months a visit. I was so busy taking care of Teddy I really didn’t think about it much and even today I guess I got in the habit of not thinking about it and it works for me. Now I am busy worrying about all of my family on this extraordinary site.
    No matter your outcome from the tests, you will meet it head on and once a game plan is set into place for you, again either way, your fright will turn to fight. Attitude is so very important in treating CC and so is knowledge. Read up as much as you can on our site as to be fore warned is to be fore armed.
    I am sorry but everytime I see Aflac I laugh as all I see is a duck! But at least that duck will bring you that secure feeling.
    By the way I think you are more elite than you think as I am sure for CC it’s more than one in 50,000. Wishing you the best results and please keep us posted, we can all help each other.

    #43464
    isaac-1
    Member

    Thanks to everyone for your words of support, I am sure I will be asking a lot of targeted questions in the near future, we just made it home from Houston, saw no sense in sticking around there waiting on the biopsy results which we should have in the next couple of days. We talked with the gastroenterologist’s assistant today, once the biopsy results are in it sounds like they will be referring me to a surgeon that specializes in these types of cases and probably an oncologist, I am not sure why the delay since from the way they were talking this is the same basic plan regardless of the biopsy results. I am trying to keep a positive attitude, on one positive note I am glad I finally bought an Aflac cancer policy earlier this year. On a less upbeat ironic note it just occurred to me that in a strange way my family seems to be becoming more mainstream, my grandmother (on my father’s side) died of a rare cancer 1 in 3,000,0000+ slow growing blood cancer, my father just died in Feb. of a rare cancer that effects around 1 in 200,000 and now it looks like I likely have a 1 in 50,000 cancer. Of well sorry about the rant there but at least these little thoughts are half way distractions from the topic of the moment. Good luck to all of you out there in your ordeals and I will keep you posted on my progress if we can call it that.

    #43463
    gavin
    Moderator

    Hope you had a good trip Lainy, and it’s great to have you home again!!

    #43462
    lainy
    Spectator

    Hi PCL! How are you feeling?
    We cannot let you take too much of a rest as you are our Medical go to person!
    Beside medical knowledge, you are wonderful at handing out compassion!
    Honestly, I did think of you on my little road trip and was hoping you were doing great! Its good to be home!

    #43461
    gavin
    Moderator

    Hi Isaac,

    Welcome to the site. Sorry that you had to find us all here but I am glad that you have joined us all as you will find here so much information here and also, you will get a ton of support from all of us. I can’t really add anything to what the others have said to you, but I just wanted to stop by and welcome you here.

    Please feel free to ask any questions that you have and we will all do what we can to help in answering them. I hope that you keep coming back here as you have come to the right place.

    Best wishes,

    Gavin

    #43460
    pcl1029
    Member

    Hi,Marion,
    I think you are back from Germany,right?
    Now since you and Lainy are back,I can relax and take a little rest in answering questions on this web? Thank God.
    It always make me feel uncomfortable when I cannot answer as many questions as I want to knowing that most of them are checking in multiple times during the day hoping for some answers.
    God bless.

    #43459
    32coupe
    Spectator

    Dear Ike,
    First, you have a few things working for you. You are young and it appears that you have an early diagnosis. Second, try not to get ahead of the prognosis. Many people have done far better than the prognosis so try to avoid the ‘what if’ scenarios. You are an individual – not a statistic. I was given a poor prognosis and am still on the right side of the grass many years later. Prayers are coming your way…

    bob

    #43458
    marions
    Moderator

    Hi Isaac and a warm welcome. You might want to make an appointment with Dr. Milind Javle – MD Anderson Cancer Center. In fact, you can become acquainted with Dr. Javle by listening to his presentation about current medical treatments for Cholangiocarcnoma patients.
    You may find it: top bar, Foundation, Our loose leaf notebook; scroll down to

    Spotlight Series: 2011 Review of Chemotherapy Treatment in Bile Duct Cancer.

    Isaac, receiving a cancer diagnoses always is frightening and it must be especially concerning to you because of the loss of your Dad to another rare cancer. Please, accept my most sincere condolences. Please, remember thought that you are younger, your disease may have been detected at a very early stage, and responses to treatments vary greatly amongst patients.

    As far as I know MD Anderson does not offer liver transplantations for Cholangiocarcinoma patients . Should you want to inquire about the possibility of transplantation then you would need to search out another institution offering this type of treatment option. Kathy has mentioned two such medical centers and there are more.

    Please, stay in touch. We care.

    All my best wishes,
    Marion

Viewing 15 posts - 1 through 15 (of 22 total)
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