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Author Topic: Fear of FAP / Gardner's Syndrome  (Read 205 times)

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Offline olethros

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Fear of FAP / Gardner's Syndrome
« on: June 02, 2014, 01:22:42 AM »
By far the biggest thing I struggle with in terms of HA is fear of colon cancer. Recently I've been  freaking out about having FAP or Gardner's Syndrome. I do have a couple of cysts on my body (that formed in adulthood tho) and I told by my eye doc that I have a retina freckle, but only one which I understand to be not related. I've read that folks with FAP typically have them in the stomach as well but my stomach endoscopy last year was clean. No colonoscopy to date. No family history of FAP, but still freaking out about it. Only slept maybe 3 hrs last night in fact ... driving me insane!!  :dazed:
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Offline Cuchculan

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Re: Fear of FAP / Gardner's Syndrome
« Reply #1 on: June 02, 2014, 04:38:38 AM »
Can I ask why you worry you have such a thing? After you were checked out and there was none in your stomach at all. That should have gave you peace of mind. You have to learn to trust doctors and test results. You are most probably thinking they missed something when doing the test. Which we hear a lot of. You could have another test done. It would come back negative. Would you believe it then? Or would you still think you had it? This is more about how long it will take you to accept test results.
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The Lovable Irish Rogue

Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #2 on: June 02, 2014, 07:03:39 AM »
I think the big thing that worries me is that they didn't do the colonscopy. They did almost everything else - endoscopy, abdominal ultrasound, blood work, urine sample, stool sample - all fine. But that one missing thing just freaks me out. But you're right - if I got it, I think if be fine for a time, but not too long later is think there has been enough time for change or I'd move to something new... and I know the doc took me seriously obviously. I assume if he had seen any indicator there'd be further tests. They took like 3 vials of blood so they must've run several tests there as well. But that "what if" just hangs there like poison...
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Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #3 on: June 02, 2014, 10:40:12 PM »
Ugh now I'm really freaking out. Just remembered about my daughter having a small teeth abnormality (appears to be fused teeth) which can be a sign as well. Now I'm not just worrying about me but her too .... :(
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Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #4 on: June 05, 2014, 10:10:50 PM »
I'm still really struggling with this. I know I need to stop googling but I keep freaking out. I found plenty of stuff saying the eye freckle - like if it's solitary - is not associated. In fact it said that the associated ones are pretty obvious and clear, and the data has been around for a while. The eye doc I go to is pretty good I think so I doubt he'd miss it. Plus he observed it twice over a 2-3 year period and it was the same and wasn't there in childhood. The cysts still worry me, but I've read that usually these develop prior to puberty which mine did not, and my grandfather has had plenty of cysts and doesn't have FAP. This fear is just driving me nuts though ...
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Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #5 on: June 05, 2014, 10:21:40 PM »
They did find a gallbladder polyp on my ultrasound, but I also understand this to be common in adults, but again freaking me out ... I just keep reading into everything and getting to that panic point where I just know I have the disease...  :dazed:
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Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #6 on: June 06, 2014, 02:57:23 AM »
Anyone else? Do you think it's really okay to just trust the docs here? I don't want to be needy ... just trying to cope. Been a tough week.
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Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #7 on: June 06, 2014, 03:43:14 AM »
ugh, now I just pooped and saw a few reddish chunks in it. Couldn't totally tell the color but it seemed reddish. I've eaten some red stuff the last couple of days (tomatoes, pickled plum called umeboshi, and carrots). But now I feel like I need to just go get a colonoscopy. This is driving me insane. I hate this feeling. But I'm so scared to go get one.
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Offline olethros

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Re: Fear of FAP / Gardner's Syndrome
« Reply #8 on: June 06, 2014, 10:16:40 AM »
Sorry to obsessively post. Just remembered I ate some red pickles called fukujinzuke in curry the other day. They are very red, and could easily fit what I was seeing... still, other thoughts would very welcome.
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