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GIST

Discussion in 'Health and wellbeing' started by Lilyofthefield, May 13, 2010.

  1. I have one. This persistent low-grade abdominal pain that has been going on for a year turns out to be a tumour. I felt OK when I left the hospital and went back to work but now I am all shaky. If you have to have a tumour in your stomach, this is apparently quite a good one to have but frankly I'd rather not have one at all.
    Am cancelling subscription to Weightwatchers forthwith since stomach resection means I will be fed through a tube for weeks so not much point in putting myself to the trouble of dieting right now.
    Anyway, point of thread: has anyone else had one? It's a stromal tumour.
     
  2. Victoria Plum

    Victoria Plum New commenter

    Ah, LOTF. Just wanted to send you a (((HUG))) VP xxx
     
  3. harsh-but-fair

    harsh-but-fair Lead commenter

    sorry to hear that, lil
    hope things go well with your treatment
     
  4. Crikey, Lily, you must be stunned. Never heard of that one, but even being told it's 'quite a good one' doesn't feel nice at all... it's scarey to suddenly feel so vulnerable.
    Try not to Google (too late?!) - it's never the boring straightforward bits that get the most pages.
    I wish I'd stuck to these two - note you can ask the macmillan site questions.
    http://www.cancerresearchuk.org/
    http://www.macmillan.org.uk/Home.aspx
    Lastly -I remember going through every worse scenario to ridiculous lengths. I scared myself witless. But that, once you get more involved with the people who are going to treat you, does recede. You start to see it with the realistic optimism that they do.
    But this first bit, looking into uncertainty, that's the hardest.(but it DOES go)
    best wishes non xxxxxxxxxxxx

     
  5. and I suppose you've found this one? x
     
  6. oops , this one-
    http://www.gistsupport.co.uk/
     
  7. Noja

    Noja Senior commenter

    Blimey Lily - much love and thoughts lass x
     
  8. Too late nonentomologist! I rang the hospital back with "a few queries" and the first thing the guy who did the biopsy said was "Been on Google then?"
    He said I had looked at the worst-case scenarios and to not look at anything else until I'd seen the GI oncologist! I know he's right but it's like the scab, the spot, the hangnail, the wobbly tooth.....
     
  9. AckyWacky

    AckyWacky New commenter

    I don't think there is such a thing as a 'good' tumour! It's all degrees of scary... everything crossed that it is well and truly on the less scary end of the scale. At least googling helps you prepare all the questions you need to ask. I don't do it anymore though... the scenario I had not considered was always the one that happened. Fingers (and eyes) crossed for you x
     
  10. janemk

    janemk New commenter

    OMG Lily!! Wasn't expecting to read that!

    Thinking of you.

    J x
     
  11. Bl**dy hell Lily. You take care.

    (((((Lily)))))

    I know you'd probably feel better with a firm handshake than a hug, but I can't find a way of showing that. Read brackets however you would prefer.

    Love,

    TTLxxxx
     
  12. joli2

    joli2 New commenter

    Really sorry to hear this Lily. I know that the first few weeks are the worst until you get your head round it. Looking at scary stories on the Internet is NOT A GOOD THING.
     
  13. catmother

    catmother Star commenter

    All the best,Lily. Don't know what else to say.
     
  14. Paradoxicalgirly

    Paradoxicalgirly New commenter

    OMG Lily. Really sorry to hear that. xxx
     
  15. Here it is: firm handshake:
    ==##==
     
  16. Oh Lily, you knew something was up, didn't you? I'm glad you persisted with it at the docs.
    Do you have any idea yet about its size (for surgical removal) and have they tested it yet?
    Recent drug advances make this far more treatable and decrease recurrence dramatically, even in the high grade ones.
    What have you told your family?

     
  17. mandala1

    mandala1 Occasional commenter

    Lily.......

    xxxxxxxxxx
     
  18. I see from personal that it is small at the moment and you are waiting to see how active it is.
    when is the next appointment to find out?
     
  19. anteater

    anteater New commenter

    Good luck with it all, Lily.
    I suppose the good thing is that at least you now have a diagnosis and can move on with what needs to be done, instead of being stuck eternally wondering what is wrong.
     

  20. Thinking of you Lily, just when the HRT was making you feel better this happens.
    x
     

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