Barrett's Oesophagus
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catlady
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Quote catlady Replybullet Topic: Need advice
    Posted: 04áJuná2016 at 5:59am
I have had a diagnosis of Barrett's esophagus for about 5 years or so.i have had numerous egds and biopsies and have low grade dysphasia. In October I moved to another state and got a new gastroenterologist. I had a recent endoscopy and the this doctor doesn't think I have Barrett's. He wants to see me every two to three years. This scares me because what if he is wrong and I end up with cancer. I was being checked every 6 months before I moved. I know that Barrett's doesn't go away on its own. It doesn't make sense. I had Barrett's for years and in October when I had my previous egd and now it is June and I don't. So what should I do? Do I believe the new doctor or the old one. Any advice would be much appreciated.
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jcombs99
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Quote jcombs99 Replybullet Posted: 04áJuná2016 at 12:57pm
        I hope U called the first doctor on this !!!!
U live in the US that will be easy .If any biopsies shows and 2 different doctors have looked @ it then that is what U have LGD and it should Halo(RFA) as is now.One of Ur doctors is wrong BUT which one I didn't trust my doctor . Look @ steelee posts and U will understand .There are so many bad doctors out there my doctor will ONLY do a scope then the tests himself .
He's like me I don't trust anyone .
Move on this !!!!
HGD JEFF

Edited by jcombs99 - 04áJuná2016 at 1:12pm
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chrisrob
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Quote chrisrob Replybullet Posted: 04áJuná2016 at 11:40pm
Hi Catlady,

Barrett's needs to be diagnosed by biopsies taken during endoscopy. Each biopsy taken (about the size of a grain of rice) is sliced into hundreds of slides to be visually inspected by a histopathologist looking for the columnar cells that in most countries are recognised as Barrett's.

In US, the existence of "goblet cells" also needs to be established to differentiate between intestinal metaplasia (IM) and gastric metaplasia. Sorry if this sounds a bit technical. Gastric metaplasia resembles the stomach lining but it's possible a biopsy may be taken below the "z-line" (junction between oesophagus and stomach) which could be mistaken for an oesophageal biopsy.
In US, IM has to be observed. (In UK, not seeing goblet cells is not taken to mean they aren't there but not seen.)
It may be that visually you were thought to have had Barrett's but IM has not been confirmed at pathology.

If you have Barrett's, normal surveillance protocols recommended by AGA in US, BSG in UK and other bodies in other countries, say to scope Barrett's patients every 2 to 5 years depending on size, position and risk factors, so your doctor's recommendation is no different.

The risks of progression from Non-Dysplastic Barrett's is very small - about 0.2% p.a. in the US. If it is going to progress, the initial changes to dysplasia are usually slow so more frequent scoping is not normally considered necessary. Having said that, patients can be anxious that they could just be that one person in 200 whose Barrett's has progressed and I know some members of our patient support charity for whom this has occured. In each case, however, changes in symptoms alerted them to get fast track rescoping and treatment to remove the neoplasias (first stage of cancer) before it was too late to manage endoscopically.

There is concern amongst the medical profession about unnecessary scoping and too frequent scoping. But your medical insurance may cover more frequent scopes to provide peace of mind.

I have had 3cm of Non-Dysplastic Barrett's at least 22 years unchanged (and probably a lot longer) and will probably still have it when I die of something completely different.

Go to the Down With Acid book / website to learn more. It is also linked to from the Barrett's Wessex website where you will find more information, including patient stories, and the tab "Journey" which leads to a distillation of a talk by one of our consultant gastroenterologists "From diagnosis to Treatment" which many newly diagnosed find useful.
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jcombs99
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Quote jcombs99 Replybullet Posted: 05áJuná2016 at 12:29am
Chris
   Catlady was being scoped every 6 months by her doctor claiming she have LGD the NEW doctor claimed no just barretts .It's up to the Pathology Departments , GI doctors to determine what she has. It's up to the NHS or Private ins. no matter where she is IF they will pay for treatment of WHATEVER she has .In the US or UK they will RFA LGD,HGD which in the USA Medicare and most ins will pay for just barrets too as in my case.

HGD JEFF

Edited by jcombs99 - 05áJuná2016 at 12:40am
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chrisrob
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Quote chrisrob Replybullet Posted: 05áJuná2016 at 12:47am
Dysplasia can regress to non-dysplastic metaplasia but Barrett's metaplasia cannot regress to squamous.

As this page from Johns Hopkins shwos, pathology diagnosis isn't easy. (Click on the "Images for pathologists" button.)
I have sat in a room with 100 pathologists attempting to identify slides projected on a large screen and there was many discrepancies. (I actually didn't do too badly on the diagnoses.)


If the suspect area is very small, the Seattle Protocol may miss the relevant cells (as demonstrated in the diagrams on this page from Down With Acid.)

Edited by chrisrob - 05áJuná2016 at 12:48am
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jcombs99
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Quote jcombs99 Replybullet Posted: 05áJuná2016 at 12:59am
        My doctor was many years ahead of John Hopkins Hospital with the Halo machine (didn't want it ) the same with Cleveland Clinic on treating barretts (only treated HGD)..Yes it very hard to do a scope which we all know and only 70% agree on what the slides show .
The deal is HERE WHAT DOES CATLADY HAVE ??? WHO LOOKED AT THE SLIDES AND WHERE WERE THEY TAKEN ??
Me and my doctor don't agree with regression my opinion is they were a tad bit off on the new biopsy .

CHEERS

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