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EmaF
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Quote EmaF Replybullet Calendar Event: Newbie needing advice pls
    Posted: 22áJuná2017 at 11:02pm
Hi I'm a 37yr old mum of 2, diagnosed with Barretts last November after finally going back to doctors - first went in my early 20's but wasn't really taken seriously so I just learned to live with it and it became the norm (I read the info on this site at that time and it gave me some perspective as I freaked out a bit about it to be honest).

I've since had the 24hr ph test whilst on prescribed ppi's and rinitadin, the results of which I went back for today, consultant says that the Meds seem to be keeping acid at bay and because I only have a short segment of Barretts and no dysplasia I am low risk and didn't think that surveillance would be necessary- I've come home and now I'm starting to panic all over again, consultant said I could go back to gp if I felt my symptoms have got worse but should I have been offered regular scopes (they told me that would be the case when they saw suspected Barretts at my original one)

Feeling annoyed at myself for not asking more questions at my appointment :( anyone else with a short segment, no dysplasia? Struggling to find anyone who's even heard of Barretts Oesophagus!!

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Muxey
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Quote Muxey Replybullet Posted: 23áJuná2017 at 8:45am
Hi though I am a lot older than you I have exactly the same situation
But I have a scope every 2 years , I think for your peace of mind you go back and request a regular scope .
I have had Barratt s for around 7 years with no change.
When I was first diagnosed it was worrying, but regular scopes are important.
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chrisrob
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Quote chrisrob Replybullet Posted: 23áJuná2017 at 9:24am
Hi Ema and welcome to the forum.

It is now thought there could be 3 million people in the UK with Barrett's but fewer than 150,000 know it. That's why we need to raise awareness to target anyone who gets persistent heartburn.

You are lucky to have been identified. Normal guidance given to GPs for patients reporting acid reflux is to put them on a PPI for a few weeks. If it doesn't clear up, they will be back, when the doctor will make a decision for further investigation based upon various risk factors - sex, age, ethnicity, familial history. It is most prevalent in white males over 55. A family history of oesophageal cancer is also a potential risk indicator, so a young woman is easily overlooked.
If you fit the risk model, you are referred to a gastroenterologist; if you do not fit the risk model, you are usually prescribed the PPI at a higher dose for a longer period (or supplement it with an H2 blocker like ranitidine). As you have discovered, you may need to continually "nag" to get a referral.

Although regular surveillance scoping does provide some reassurance for the patient, over 90% of the time, repeat scoping actually shows nothing new.
I have had my 3 cm non-dysplastic Barrett's for at least 23 years unchanged and will probably still have it when I die of something unrelated. (I am scoped every 3 years now, the next due in August.)

This page from the Down With Acid book (www.DownWithAcid.org.uk) has a map showing the recommended treatment guidance from British Society of Gastroenterology regarding surveillance scoping for Barrett's.

Barrett's oesophagus is a condition whereby some of the normal (squamous) cells lining the oesophagus are replaced by protective columnar cells, which are more acid resistant. These cells may be described as cardial or gastric metaplasia (resembling the stomach's lining) or intestinal metaplasia (resembling the lining of the intestines). (Except in US where only intestinal metaplasia is regarded as Barrett's.) Intestinal cells differ from gastric ones in that there are "goblet" cells mixed amongst them. It is thought there is a greater risk of possible progression from intestinal metaplasia. (If progression ever does occur, it is via stages of dysplasia. Low Grade Dysplasia has been found in both gastric and intestinal cells but records only show High Grade Dysplasia in intestinal cells. It is not known whether goblet cells may develop amongst gastric cells.)

If you have short segment (ie less than 3 cm) gastric metalaplasia, it is considered the risk of progression is too low to merit regular surveillance scoping.
However, you now know you have this condition and if you notice any changes in symptoms, do ask for another scope.


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jcombs99
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Quote jcombs99 Replybullet Posted: 23áJuná2017 at 2:50pm
Muxey
     Yup that the way u do it TWO years or less by a Great Doctor .When u first start out I would every year then when u have ur reflux under control 2 years BUT never more . Ask the folks here with cancer if they would do a scope every year not 1 to 5 years like the NHS wants .Don't count on the NHS catching it before it hits cancer nice PR but untrue .

CHEERs

Edited by jcombs99 - 23áJuná2017 at 2:51pm
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chrisrob
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Quote chrisrob Replybullet Posted: 23áJuná2017 at 4:06pm
Sorry to disabuse you, Jeff.

Reducing surveillance intervals is not for NHS to save money. The UK guidelines were adjusted to bring them into line with US guidelines to a degree, which say:

"21. For BE patients without dysplasia, endoscopic surveillance should take place at intervals of 3 to 5 years (strong recommendation, moderate level of evidence).
"22. Patients diagnosed with BE on initial examination do not require a repeat endoscopy in 1 year for dysplasia surveillance (conditional recommendation, very low level of evidence)."

It's probable, as "consider discharge" is the advice, that Emma has gastric metaplasia so would't be classed as having Barrett's in US.
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jcombs99
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Quote jcombs99 Replybullet Posted: 23áJuná2017 at 4:24pm
Chris
        Sorry to disabuse u or the NHS but my doctor I bet would want a Scope in a year too Careful Lives as in ME !!! To see hows it going proper Diet,PPI's ect .
   Like I said many times If I was with NHS I would be DEAD or Missing my O not fun either way. My Doctor's guidelines which works very well he had TWO PATIENTS go to OC since 2006 when he got his Halo machine .

1) EGD every year with NDBO
2) Up to patient if he wants NDBO RFA .
3) All patients with LGD or HGD get RFA RIGHT NOW AS IN THIS WEEK .
4) No patient is Ever Discharge or Released or sent home Ect Ect.

Simple isn't it .

By the way how's the NHS doing with Colon Cancer I think it's the 2st leading cause of cancer deaths in the UK . How does that go a Scope @ 60 and in the US it's 50 or lower !!!!

CHEERs

Edited by jcombs99 - 23áJuná2017 at 4:37pm
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EmaF
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Quote EmaF Replybullet Posted: 24áJuná2017 at 1:29pm
Thank you for the advice and information, for my piece of mind I decided to give the consultant a call and his secretary was great, she's asked me to put my concerns in an email to her, I've asked if I could have another scope in 2yrs and if my symptoms are still under control (although i do still have to avoid certain foods even on meds) and there is no progression I'll decide at that point what to do

Thanks again
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jcombs99
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Quote jcombs99 Replybullet Posted: 24áJuná2017 at 1:37pm
E
   Good for u didn't wait 2 to 4 months and worry u contacted them .If u want a Scope LIE tell them ur having trouble or you can pay the $2K yourself !!!My doctor does this for me that is his Job not mine he wants the $$$ ..Never sit back and wait for the NHS to do anything others did u don't want to missing body parts.

CHEERs

Edited by jcombs99 - 24áJuná2017 at 1:38pm
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bobdigi
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Quote bobdigi Replybullet Posted: 03áJulá2017 at 10:34pm
I'm 38 and have short segment between 1 and 2 cm depending on the consultant it seems.
I am having a scope tomorrow morning after my ppi''s seem less effective. If everything is good I will be due a scope in 3 years. Obviously I'm panicking a bit. But hopefully everything will be OK.
I would definitely push for regular scopes!!!!!
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