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Concerned

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Barrett's Oesophagus
Forum Discription: Your Questions about Barrett's Oesophagus
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=1984
Printed Date: 22 Aug 2019 at 5:03am


Topic: Concerned
Posted By: WBLL
Subject: Concerned
Date Posted: 20 Oct 2018 at 2:26pm
Hello

I am new to this. I was just diagnosed with Barrett’s two days ago. I am having a hard time sleeping and have become depressed. I am 50 years old and had an endoscopy done due to some ongoing reflux the last 20 years. I had an endoscopy done 16 years ago that was normal. This time the doctor found an irregular z line with 2 toungues around 1 cm long. Biopsy was positive to interstitial metaplasia. No Dysplasia. I was placed on a PPI 40 mg a day just yesterday, prior to that I was on H2 blocker only at night for years. So I am struggling with the thought of Barrett’s turning into cancer and see articles where it is anywhere from .5% per year to 0.01% per year. I would like to live 40 years so am I looking at a 20% chance in 40 years of my Barrett’s Turing In to cancer? I am having a really hard time with this. Thanks!



Replies:
Posted By: chrisrob
Date Posted: 21 Oct 2018 at 9:10am
Hello and welcome to the forum.

Firstly, I am fairly certain you will not get oesophageal cancer. The risks are actually very small.

In the USA, population is around 325 million of whom probably about 16 million have Barrett's. (We don't know the actual number without screening the entire population which isn't practical but this guesstimate comes from Mayo Clinic.) Of those, around 16 thousand will die each year from oesophageal cancer, making the risk of progression about one in a thousand or 0.1% p.a. However, as with tossing a dice, the risk isn't cumulative and your chance of getting cancer is probably the same next year as it is this year. In fact, studies have shown, if it is going to progress, it is more likely to do so in the first year or two after diagnosis.

I know I have had my own Barrett's at least 24 years and probably much longer and am no more risk now than I was 20 years ago.

Having been diagnosed, you are one of the lucky ones. You know to take acid suppressant medication which probably reduces that risk even further and will have regular surveillance scopes every few years to check it there are no signs of progression ("dysplasia") whence it could be ablated to prevent the cancer occurring. (Those at risk are those who have Barrett's but don't know it and won't discover it before it's too late.)

The other thing going for you is the size of your Barrett's segment which is very small. Some physicians won't actually classify < 1cm tongues as being Barrett's.

Think of your Barrett's cells as a natural protection thrown up by the body as a protection against acid attack. (See https://sites.google.com/site/barrettswessex/tips/barry - this story on the Barrett's Wessex website for a different way of looking at this.)

You may find the free encyclopaedia, https://sites.google.com/site/downwithacid2/ - Down With Acid helpful. You will find in the https://sites.google.com/site/downwithacid2/home/addenda/patient-concerns - addenda you are not alone in your concerns about the condition but just recognise it for what it is. You have an increased risk of developing cancer but you're more likely to be hit by a truck.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: WBLL
Date Posted: 21 Oct 2018 at 10:55am
Thank you for the response. I am trying to not let this take over my life. Any advice on PPI during day and H2 blocker before bed?

Can probiotics play a role in helping against reflux?


Posted By: steveb8189
Date Posted: 22 Oct 2018 at 2:58pm
Hi Bill

I sometimes get slight IBS symptoms which causes bloating which leads more reflux and I find the probiotics help this - I usually have actimel.

I guess the yoghurt also soothes your esophagus and stomach a little too if you have excess acid.


Posted By: WBLL
Date Posted: 22 Oct 2018 at 9:02pm
Just wondering from a member stand point how long have some of you been living with the diagnosis of Barrett’s and undergoing surveillance?


Posted By: chrisrob
Date Posted: 22 Oct 2018 at 10:54pm
I know I've had Barrett's at least 24 years and probably much longer. Somehow managed to drop out of the surveillance programme for a few years but that was back on track by 2007. Lost count how many scopes I've had. My Barrett's hasn't changed in all that time. Initially it was c2m3 but following Collis procedure (effectively lengthening the oesophagus to provide a better Nissen wrap), it is now recorded as c6m8. After 2 scopes a month apart at the beginning of this year, I'm now happy I'm now on 3-yearly surveillance scopes with my next one scheduled for 2021.

(The Prague classification (c & m numbers) is described at the bottom of

https://sites.google.com/site/downwithacid2/home/complications/barrett-s-oesophagus - this page of the https://sites.google.com/site/downwithacid2/ - Down With Acid encyclopaedia.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: steveb8189
Date Posted: 23 Oct 2018 at 9:44am
Only 3.5 years for me and no changes yet C2M2. Scope every 2 years although the recommendation is 3-5 for my condition.


Posted By: pylorius
Date Posted: 23 Oct 2018 at 10:57am
I was diagnosed last December with Barretts and C0M2, recommended treatment is long term PPI but not surveillance. My question is what determines a recommendation for 'surveillance' and how can I get a follow up scope in 3-5 years?


Posted By: chrisrob
Date Posted: 23 Oct 2018 at 11:17am
The argument is we scope too frequently since the vast majority of scopes don't reveal anything new. Although the patient feels reassured, the risks of damage to the oesophagus from scoping also need to be taken into account.

The https://sites.google.com/site/barrettswessex/treatment/guidelines - BSG guidelines show this flowchart to help recommend surveillance intervals:


They suggest anything less than 3cm could be considered for discharge if it's gastric rather than intestinal and anything less than 1 cm may not actually even be described as Barrett's.

But there are more factors taken into account other than length - including body build, familial history, anxiety etc.
If you are not on a surveillance programme but do become concerned your symptoms are changing, you can always request a scope to investigate.

This is not just the NHS saving money, though, of course, that's a consideration as well as the time and workload, but is similar to other countries' recommendations which are linked to on https://sites.google.com/site/barrettsoesophagusuk/about-barrett-s - this page of the Barrett's UK site.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: WBLL
Date Posted: 26 Oct 2018 at 12:18pm
Has anyone had anti reflux surgery (Nissen) and how were the results and are you limited now in what you can eat?


Posted By: chrisrob
Date Posted: 26 Oct 2018 at 12:37pm
Hi again.

I've had 2 fundoplications.
When I first discovered I had Barrett's 24 years ago, I was offered the surgery bt at that time it was open surgery and sounded horrific. I decided, the PPIs reducing my acid effectively, to continue just with medication.

10 years ago, realising my reflux symptoms (particulary cough) were getting worse and increased PPI (80mg omeprazole) was ineffective, I asked for the surgery.
It worked well and I only wished I'd had it earlier.

5 years ago, following 5 hours violent retching from norovirus, the wrap cam loose and I had it repaired with a Collis Nissen revision.

The Barrett's Wessex website carries accounts of a number of patients' experiences you may read
https://sites.google.com/site/barrettswessex/home/patient-experiences#TOC-Fundoplication - here - including my original fundo.
You may also read about my "refundo" https://sites.google.com/site/robichris/barretts/refundo - here if you're interested.

Regarding food. The advice is liquid or soft mushy food for a couple of weeks gradually becoming more solid as the internal scar tissue heals - but you can probably be guided by your own body.
I was eating things like shepherd's pie immediately but you feel full very quickly, not able to eat full meals until your internal architecture sorts itself out.

Cheers
Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk



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