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Samanthasue
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Quote Samanthasue Replybullet Topic: A bit scared!
    Posted: 06 Oct 2014 at 6:51pm
Hi there,

Does anyone ever go through moments of great fear. I was diagnosed with Barretts 4 years ago and my doctor said there would never be any chance of cancer because they would keep an eye on it - scope me every 2-3 years and ablate cells if they ever show up. I have no dysplasia. I was scoped a year ago and still no dysplasia.

But the last six months - due to my husband's medical problems - I've been really stressed and not watching my diet very carefully. Needless to say - I'm struggling with acid reflux again which has been mainly controlled through PPI'S. I found myself eating junk food and popping an antacid pill or another PPI to control any symptoms.

I'm back in control now - just the past few days - where I'm watching my food intake but for some reason I have swung into panic mode and I'm convinced I'll end up with
EC.

Anyone else have moments like this?
Sue
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jcombs99
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Quote jcombs99 Replybullet Posted: 06 Oct 2014 at 10:17pm
          Me Too Kid But that's not the way it works you have to go thru a few stages like LGD then HGD (Which I HAD) so go back to a good diet like I'm doing now and watch your weight . We all need to be straighten out now and again.

HGD Jeff

I'm sure Chris is having a grand time in Peru camping I'll take my hotel in Paris but it is for a good cause ..

Edited by jcombs99 - 06 Oct 2014 at 10:18pm
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Samanthasue
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Quote Samanthasue Replybullet Posted: 06 Oct 2014 at 10:56pm
Hi Jeff,

Thanks for your sweet reply. It's true - I need to get back on track. I ordered the 'Dropping Acid' book by Dr. Koufman and I'm just eating bland, plain food to help heal the possible damage I did.

Did you have an ablation? Did you have non dysplasia for a long time before the cells changed?

Sue
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jcombs99
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Quote jcombs99 Replybullet Posted: 06 Oct 2014 at 11:14pm
Sue
      No need to spend more Funds Chris will be back in a few days and he will point you in the right direction ..

   Had 5 Halos(ablations) no BIG deal.. Get scopes as often as you can Con NHS into giving you one .
        I was getting scopes at 3..4.. now 6 months because I had HGD..

Cheers
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Binz
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Quote Binz Replybullet Posted: 07 Oct 2014 at 7:57am
Hi Sue    
I did panic when I 1st found out I had Barrett's (not helped by the consultant but that's another story). Panic has gone but there is always a feeling of 'what if?' and in some ways that has helped focus life on the more important things e.g. Looking at what I want to achieve in life and how can I make the changes needed to do those things.

Based on what I've read there's a 90% chance we'll still be OK in 20 years from now - so if you look forward what do you want to achieve in the next 20 years and how can you make it happen?
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Samanthasue
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Quote Samanthasue Replybullet Posted: 07 Oct 2014 at 1:01pm
Thanks Binz and Jeff. I was diagnosed 4 years and just scoped a year ago and still no dysplasia, but the past 6 months have been really stressful. My husband has a history of severe illnesses - heart and cancer - but 6 months ago they said he had colon cancer and would need surgery and chemo. Turns out he had a benign flat poly that was removed - so no cancer at all - which is fantastic. But during the 2 months it took to figure things out, I gained some weight, was stressed out from being in the hospital so many times with my husband, and my acid reflux started to act up. Guess thinking about cancer got me worried about my Barretts. I'm back in control now and I'm eating properly and I'm seeing my specialist in a few weeks but I'm still feeling anxious. Not sure why I was so stressed out this time since my husband has had open heart surgery, stents, prostate cancer, seizures etc. You'd think I'd be use to being in and out of hospitals by now. But nope - when they said he had colon cancer, I was crushed to see him go through this. But it was good news in the end. But it seemed to set me off.

Thanks so much for listening.
Sue
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Warwick
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Quote Warwick Replybullet Posted: 08 Oct 2014 at 10:46pm
I'm a newbie. Diagnosed last September after 9 months or so of throat pain etc. (I'm more a silent 'LPR type' than a classic heartburn type refluxer it seems)...

It was very scary being told that I had a 'pre-cancerous condition' while I still had a scope in my gullet, but what was worse really has been the total lack of any clear advice, follow up or treatment plan. Just a kind of "well, we'll scope you again in a couple of years if you like to see if anything's changed. Here, take a load of PPis. Forever..."

I have been, frankly, shocked at the complete lack of follow up, aftercare, or even the provision of any definitive info from the NHS. How can it possibly be anything other than completely irresponsible to give someone that kind of diagnosis and then just leave them to their own worries and the inaccuracy and vaguaries of the internet?

So, yeah, I've been scared. Scared. Depressed. Confused. Angry... Pretty much most things other than reassured or cared for.

On the plus side, finding this place and taking some time over the last few months to read through past posts and explore the excellent resources has really helped me feel a little less alone, and I thank Chris and all contributors for that from the bottom of my heart.

Thanks all! x           
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Samanthasue
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Quote Samanthasue Replybullet Posted: 08 Oct 2014 at 11:52pm
Hey Warwick,

My doctor told me after the scope that she thought it was Barrett's and took biopsies. When I went to get the results, she didn't even have them and asked the secretary to retrieve them. While we waited, she started talking about weaning me off the pills for acid reflux. I said, "But don't I have Barrett's?" She said, "No." Then a few seconds later she read the reports and said, "Oh, yeah, you do. Stay on the pills and I'll scope you in 3 years." Man, I was terrified, so I made another appt. in a week to get more information. I asked her what the chance was of my getting cancer and she said 'O' because we will keep an eye on it and ablate it if the cells change - I have no dysplasia.

It's so scary when you read stuff on the internet and it always says that it's pre-cancerous. Sheesh!!!!! But when you read further, you find out that few with Barrett's get cancer and that they can eradicate it before it turns to cancer. But when you first read stuff, it sounds like you'll get cancer immediately.

So this forum is great. And so encouraging. My doctor just told me not to worry about it but I do worry.

Thanks for sharing your story - I appreciate it.

Sue
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jcombs99
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Quote jcombs99 Replybullet Posted: 09 Oct 2014 at 10:03am
Warwick
   Six years ago the GI's laughed they never heard of " Silent Reflux " or I guess they call it LFR now ..NHS did come around to ablating LGD and HGD but they want to change the scopes to 3 to 5 years but that's to long apart a LOT can change .We had a few over the years go to cancer in 2 years also take a look at the Morressey case. The reason you want one year is because many times they miss something then catch it the next time in your case that could be 4 to 6 years not good .
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Samanthasue
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Quote Samanthasue Replybullet Posted: 09 Oct 2014 at 6:12pm
Hey Jeff,

You had 5 halos - wow!! Is it an in and out of the hospital procedure? Is there a long recovery time? Just curious.
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