Discussion Board Forums General Discussion anyone out there like me?

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  • #32041
    marions
    Moderator

    I also would like to welcome you J. Congratulations on your successful resection and the clear scans coming your way. If I may ask, where have you been operated and what was your experience?
    I am so glad that you have found us.
    Best wishes,
    Marion

    #32040
    lainy
    Member

    Welcome J to our little world and so glad you found us. Congratulations, you are already a survivor. Sounds like you have a great attitude and headed in the best direction. Please keep us posted on your progress. How wonderful to have such a loving husband and your 3 little ladies all pulling for you. Great story that we hope has a Fairy Tale ending.

    #32039
    roxiefoxie
    Member

    Hi there, I’m new here but stumbled upon your post and wanted to respond. I had my surgery back in May and have since been cancer free. I am in the process of additional treatment just be sure as one of my margins was pretty close. I’ve already had radiation and chemo (5-FU) and am about to start te second round of chemo. I’ve had several CT’s and a PET scan recently and all came back negative. I’ve got 3 little girls at home plus a husband who likes to have me around :) so I’ve agreed to continue these treatments as I never want there to be a day when I say to myself “I could have done more”.
    Warmly, J

    #32038
    betsy
    Member

    Hi Sue,

    I was wondering if you had any ascites after your resection? I had some fluid drained on Tuesday and sent to the lab. My doctor said he doesn’t think there is any cancer, but thinks there may be a bile duct leak. His other theory has to do with “too much flow” for my liver to handle. Ever heard of that? If I understood him correctly, the liver has two arteries flowing into the liver and one flowing out. If my liver isnt funtioning quite right, there is a back-up of fluid which filters out into my abdomen.

    Hope you are doing well.

    Betsy

    #32037
    irenea
    Member

    Hi Betsy:

    Not sure there are too many that are cancer-free, but I think some (those of us in the “incidentally found” tumor world, as in “oops there’s a tumor in your liver. No there’s two!”) are , to some degree, symptom-free.

    Which is something.

    #32036
    paa
    Member

    Betsy:

    Her surgeon also said his opinion was that chemo/radiation was not necessary, primarily because it’s not proven to have any effect. But because her margin was very close, and in keeping with the agressive nature of her treatment plan, together with the radiation oncologist and oncologist, she decided to go forward with a course of radiation/chemo followed by a course of chemo, just to be sure. I think it’s a personal decision what to do, and you just have to do what you think is right for you based on the information that you have.

    p

    #32035
    scragots
    Member

    Betsy,

    As sweet Kris mentioned, I had my resection in January of 2007 and so far I am still cancer free! I just had a recent CT (Sept 18) and the doc says everything looks great! She told me that most recurrences occur in the first year and by the end of the second year, the recurrence rate lowers to single digits. Obviously that does not mean it won’t come back, but it sure sounds better than the original diagnosis!

    Feel free to ask me any questions. My heart goes out to all who fight this stinking disease, and I always hope that people see my posts as good news, hopeful news.

    Hugs to all,
    Sue

    #32034
    just_jill
    Member

    Betsy,

    I had the whipple surgery on Sept 20th of last year. It was not until Feb, that I was well enough to get into the oncology office. They also did not see any benefit in chemo nor radiation, as my margins were all clear and no lympth node involvement.

    My blood is checked monthly, and I do have some numbers that are a little high for their liking. I am scheduled for a CT tomorrow, but, will not get results until the second of November.

    Insurance companies will say you have to be cancer free for ten years, before they will cover you. Others will say only five years. Its a crap shoot if you ask me.

    Let me say, I am very glad to see you here and very glad your tumor was successfully removed! We are few and far between!

    #32033
    betsy
    Member

    paa,
    thanks for your post. Your sister’s surgery was at John Hopkins, right? Mine was at the Cleveland Clinic. The oncologist I saw said he wouldn’t recommend chemo/radition since I was cancer-free but I’m wondering if I should get a second opinion? Did your sister get a second opinion? How’s your sister feeling these days? Also, did your sister have any health issues before being diagnosed with CC? I have Celiac and was diagnosed with it about 2 years ago. The doctors think that was the same time my tumor started to grow but can’t see how the 2 could be related.

    Betsy

    #32032
    paa
    Member

    My sister, who is right around your age Betsy, had a resection for a Klatskins tumor in early June at Hopkins, with no lymph involvement and no metasteses. The surgery was very agressive, but they were able to get a negative margin and she is cancer free now too. They are now doing agressive radiation and chemo to make sure it doesn’t come back.

    #32031
    devoncat
    Member

    I am not unfortuneatley, but there are several here who are. Sue springs to mind, and she is just a couple months shy of 3 years cancer free. Woot woot (as my sister would say).

    Kris

    #32030
    walk
    Member

    Wow, that’s fantastic. CC odds say you’re something like one in a million!

    #2767
    betsy
    Member

    Hi All,
    I’m wondering if there are any CC patients who are cancer-free right now. I had a liver resection last Jan. 2009. The cancer was not in lymph nodes and had not metastasized.

    Betsy

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