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Dan_uk
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Quote Dan_uk Replybullet Topic: Barrett's under 30?
    Posted: 21 Apr 2016 at 3:47pm
Hi All,

New to the forum- 28 yr old male, diagnosed with 2cm Barrett's (Eosophagal Metaplasia only) about 4 months ago. Apologies in advance, this is a long post as I wan't to share my take on this, which differs a little from what I've read so far- also, this is only my own experiences/choices, so please do not be too upset if you don't agree! First some the points on my own condition to put the rest in context:

- I suffer from silent reflux/LPR mostly, certainly since getting Barret's, so do not require Acid blockers on a 'comfort' or pain level, but of course the reflux could still be there
- As mentioned I'm 28, a reasonably early age to get Barretts

Since diagnosis, as most of you I'm sure were, I was pretty worried and did a LOT of research. Since I've spoken to two great, well-respected, London based Barrett's specialists, to help understand the condition. These are my findings (clarified by specialists I saw) and again, not saying these things to cause upset but rather get to the bottom of what, if anything, we can do about Barrets once we have it. Hopefully some of you find it useful!


PPI'S: There is no/little evidence that PPI's help stop the Barrett's progressing into Dysplasia or AC. I realise different studies say different things, but my specialist did confirm this and as a result, I am now not taking PPI's at his written approval. They have some long term affects, mostly to do with nutrition absorption I understand, but I think that isn't too huge a worry. The point in my case was they made me tired, sluggish and I didn't suffer from reflux symptoms or heartburn anyway (doesn't mean reflux wasn't there of course). I, like some, am a little dubious about the rise in AC correlating with the rise in use of PPI's. YES- there are studies to show they can have a positive effect, others contradict that. My view is when they were far less prevalent there were less cases- it could turn out that the combination of PPI's with a certain other lifestyle choice, or condition is what makes them unsuccessful in some, and successful in others to a degree. It's not a risk I want to take and I'd rather alter my diet to avoid any reflux I may still be having.

Surveillance: I think we mostly all know this, but very few cases of AC are found early enough to be prevented using the surveillance method. I can't seem to understand it's benefit other than peace of mind- an expensive way to get it if not on the NHS! In the 3-5 years between endoscopies for not dysplasic Barrett's, the condition could- potentially- fully change to AC without significant change in symptoms. This begs the question- why not just ablate ALL barrets as we would any other cancer at an early or precancerous stage? Well, I posed this question to my very experienced specialist. The answer? Money. It's too expensive, and he quite honestly (which I very much appreciate) told me that every life needs to have a value in the medical profession. The extreme cost of ablation cannot be afforded by the NHS, so we are, quite literally, rolling the dice instead, as there's not much other choice. I'd like to see this change- he agreed as high as a 5% risk is enough to warrant ablation, if only forthe obvious psychological impact having a 1-in-20 risk of getting cancer would have on anyone. Completely ignored by those others who give you the pills and send you away, with the belief these will 'stop' any changes. It's, in my opinion, a bit of an avoidance for the ugly realities, unfortunately.

Age: This is very early research, but one specialist informed me his colleague works in AI, and is very close to some important information of age in relation to Barrett's. I've read a few studies claiming early onset (<30) , in males particularly, can lead to an increased risk of cancer. Therefore, of the 5% who get it, they may well have developed it at a young age. The issue is identifying when it started. However, this doesn't change the fact that getting AC at a young age is rare, just that the propensity to get it at an older age is more likely if you got Barretts at a young age. It seems Barrett's as once believed doesn't follow a 'linear' pattern from: Barretts- dysplasia- AC as once thought, and it can go back and forth between stages (not AC of course). So, in that sense, it makes perfect rational sense that the longer you live with it, the higher the chance of it changing to AC rather than dying from a completely seperate illness in old age. Again, it's a bit of a lottery.

In summary it would be great to hear from any other members who have gotten Barretts at an early age, or who have decided not to take PPI's. Also anyone who finds that whole think such a frustrating and mind-boggling illness- not because of the illness itself but the lack of funding for complete eradication (which i suspect will change in years to come).

Thanks!

Dan
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Pyrrhonist
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Quote Pyrrhonist Replybullet Posted: 21 Apr 2016 at 4:32pm
Dan

You and I seem to have very similar views. It's probably best to not discuss via the forum, so perhaps you'd like to email me privately.

I've had life-long reflux, and now have a long section Barrett's. I don't take PPIs.

My full details are in my profile.
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.
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chrisrob
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Quote chrisrob Replybullet Posted: 21 Apr 2016 at 4:35pm
Hi Dan and welcome to the forum.

Glad your Barrett's obviously doesn't have signs of dysplasia. Do you now whether the diagnosis was intestinal or gastric metaplasia?

Glad too you've been doing your research, as I have spent the last 15 years so doing. I maintain a library of links to relevant abstracts on the Barrett's Wessex website, here.
You may also find this publication from the Ryan Hill foundation extremely useful even though it's now a few years out of date. (It used to be a website but Astra Zeneca removed the grant which had enabled the site.)

Were either of your London based specialists LL or RH at UCLH or JD at St Tommy's? I would probably consider them the best Barrett's consultants in London but I wouldn't have thought they would have dismissed the S Singh et al meta-analysis Acid-suppressive medications and risk of oesophageal adenocarcinoma in patients with Barrett’s oesophagus: a systematic review and meta-analysis.

The utility of surveillance scopes at around £300 a time have been questioned but do provide the patient with reassurance. There is considerable research underway to attempt to identify those patients most at risk of progression to be the target of surveillance scoping. (At the London Barrett's Symposium last week (attended by the consultants I referred to above and others form UK and abroad) CORE, the BSG charity, had a workshop where they were attempting to determine what patients think should be the main focus on funding. I believe they are still collating results so you may still participate here.
CORE are working with all charities involved in research into Barret's and oesophageal cancer to better enable grant applications.

Action Against Heartburn were provided with the most up to date information on rates of progression of BO to OAC in UK from Cancer Research UK prior to the 2015 Be Clear On Cancer campaign which we had brought about. You may see those results in graph form on this page. CRUK also stated, ["COLOR=brown]People aged 30 years with newly-developed Barrett's Oesophagus may have a risk of 11-25% of developing adenocarcinoma before they reach the age of 80 but there are may variables to take into account."

As far as ablation therapy is concerned, however, it is not recommended for non-dysplastic Barrett's. the fact that Barrett's developed once means you have a propensity for it to develop again. If there is any sign of dysplasia, however, it means the risks are higher and ablation is a possibility. NHS will now ablate LGD free. (Though LL, who manages the UK HALO registry, (or RH) would happily ablate you at the London Gastroenterology Centre just round the corner from Harley Street, if you wanted to part with your money.)

Meanwhile, can I point you to this page: PPI dangers and recommend the Down With Acid book which is a compilation from years of answering the same questions on various forums and facebook groups over the years, fully researched and vetted by some of the country's top gastroenterologists.

All the best

Chris
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Dan_uk
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Quote Dan_uk Replybullet Posted: 21 Apr 2016 at 5:16pm
Hi Chris,

Many Thanks- all links seem very useful, after a brief scan. LL was indeed one of the specialists and the one who confirmed the point you mention. My GP was instructed to take me off PPI's due to lack of evidence and at my request based on not having reflux symptoms.

I've seen the analysis you link to by S Singh, I think you may have linked to it before? I think the evidence in that shows benefits over long term use, but I get the impression newer studies have been conducted, perhaps introducing additional factors/affectors, to prove otherwise. LL did say we are 'starting' to see some very minor evidence there may be a benefit, but he certainly couldn't confirm when asked that it is proven to help. He's not alone, I don't think I've seen any specialist categorically say they prevent changes- most that they 'can' or 'could help' prevent changes at best.

I hadn't heard the 11-25% info but it certainly confirms what all the clues and advice pointed to! Worrying stuff, really. So theoretically, I for example, would have up to 1-in-4 chance of developing it based on this, along with many others. This is what really confuses me in regards to the avoidance of ablation. I understand the point you're making that it can quite possibly come back, but this is the case with all cancerous conditions- I've never heard operations refused based on the possibility of it coming back- but I do get the point you are making. It's not in their interest right now, certainly for Non-dysplasic cases. The issue is we already know with some certainty for at risk individuals, with Barretts, its fairly likely to change, so why wait until it has, or hasn't changed? I keep coming back to the 'lottery' mentality that I just don't understand. On this, do you know where the 11-25% initially came from? LL mentioned identifying my own 'personal risk' and I think this is something I'd like to look into, especially to see when the expected onset of AC of those with barrett's at <30 is, if only find out 'how long i've got!'

LL did confirm he wouldn't and couldn't offer this for Barretts, and only LGD, which I do understand. Unfortunately I don't see the NHS offering it for this, which is frustrating when the individual risk could be as high as 1-in-4.

On PPI's dangers (link you provided) does this mean you too are anti/do not take PPI's? Interested to hear your experiences of this.

I guess to summarise my confusion regarding surveillance- I don't understand WHY it is so bad at preventing cancer. I understand (please correct me if I'm wrong) this is slow-to-change cancer, but it can change between endoscopies. Why, in that case are endoscopies say, every year, where they could probably find almost ALL cases of Dysplasia and ablate them before they changed? Is it really just down to money?

On Ablation again, LL's stance is it is a cure- he categorically said Barrett's can be cured complete using this. Furthermore, it seems the smaller the section, the easier and more effective it is (goes without saying really) so all the more reason for doing it at the earliest stage possible. It's this conflicting information that makes it so hard to understand why they can't stop this thing, and why the same old methods haven't advanced or changed at all. If you can shed any light on this hugely confusing topic I'd really appreciate it!

Thanks Again,

Dan



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Dan_uk
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Quote Dan_uk Replybullet Posted: 21 Apr 2016 at 5:18pm
@ Pyrrhonist Cheers! Always good to have someone who shares views. I'm never sure if what I hear is true, but I'm really just trying to understand why ablation isn't offered for non-dysplasic Barrets, even if you wish to pay for it (I don't anyway, not at 5 grand!).

Edited by Dan_uk - 21 Apr 2016 at 5:19pm
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Dan_uk
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Quote Dan_uk Replybullet Posted: 21 Apr 2016 at 5:29pm
@Chris Sorry I forgot to answer your question on Gastro or Intenstinal Metaplasia, consulting my report i have C0M2 Intestinal Metaplasia. I also note that LL said 'with SS Barrets and the presence of Intestinal Metaplasia, the risk of developing Oesophagal Cancer is one case every 340 years of patient follow up.' could you interpret what that means exactly? Doesn't mean much to me!

Many Thanks,

Dan
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jcombs99
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Quote jcombs99 Replybullet Posted: 21 Apr 2016 at 5:41pm
Dan
I have silent reflux like U and I had HGD because I couldn't feel the pain .So try to do things so Ur length of barretts or STAGE (LGD,HGD,CANCER) doesn't change for the worse my Doctor like I do say it can't REGRESS which the NHS states it can .
1) Read Down with Acid Book like 5x so U understand what's going on.
2) Get on the correct PPI and Dose to stop the acid .
3)U have to work with the NHS or U will go broke try to get a Scope every 2 years for free BUT pay for a scope between that one .I BET YOUR ODDS OF GETTING OC IS LIKE   ZERO Then .
Lots of rubbish out there had 5 Halos and been on 60mg of PPI's for 8 years and everything works.
Next scope 10th..

CHEERs

HGD,Fundo Jeff
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Quote chrisrob Replybullet Posted: 21 Apr 2016 at 5:52pm
Dan, don't get over-concerned. It seems that for the majority of us who develop Barrett's, it won't progress further. For those who start showing signs of progression, it's more likely to continue progressing.

Surveillance is a difficult art. Where does one take biopsies from and will the tell-tale cellular changes be seen?
For most people any progression is slow initially (which is why surveillance every few years is sufficient) but for some (the 0.6% in UK - where we have the highest incidence), it can happen much quicker. I was talking to a new member of Barrett's Wessex just last week who had been found on scope to just have grade 2 oesophagitis and within a year had stage 2 adenocarcinoma and an oesophagectomy.

But the percentage of recurring Barrett's following RFA can be quite high. (Can't locate those figures immediately though these studies may give a clue to the possible problems: Predictors Of Treatment Failure After Radiofrequency Ablation, Detection of buried Barrett's glands after radiofrequency ablation, Esophageal neoplasia arising from subsquamous buried glands ...
(I've only checked the archive for papers published this year but know I have a number of files over previous years I could search.)

Intestinal metaplasia has a slightly increased risk of progression over gastric metaplasia. Whereas most countries classify gastric metaplasia as Barrett's, in US, it has to be intestinal to qualify.
From What is the histological definition of BO?
It is generally agreed that Barrett’s Oesophagus is characterised by metaplastic columnar mucosa replacing normal oesophageal squamous mucosa, but at this time clinical studies are contradictory about whether histologically-proven intestinal metaplasia (IM) with morphologically typical goblet cells should be necessary for its diagnosis.

C0M2 is the Prague classification for your Barrett's. The C shows the height of a circumferential collar - which the 0 shows is non-existent with you. The M shows the maximum length at any point - yours stretches to 2 cm.
I'm not sure of his quoted statistics. I know he didn't get the figures from the UK Barrett's registry (the largest of its kind in the world - and where CRUK got their data). I could ask Christine Caygill who manages it for BOC but it could be a big job.
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Quote jcombs99 Replybullet Posted: 21 Apr 2016 at 5:58pm
Dan doesn't have the funds for Halo (2) so work with the NHS on SCOPES and DRUGS ..www.treatbarrettes.com has the data like 86% clear after 2 years BUT how about 5 or TEN big $$$ to do it.
Lots of tests he can take ..
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Dan_uk
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Quote Dan_uk Replybullet Posted: 22 Apr 2016 at 1:02pm
@Jcombs Thanks, good advice, I'm definitely thinking of paying for annual endo's. Sorry to hear the silent reflux mean you didn't find it sooner, it does make things much harder.
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