Barrett's Oesophagus
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jcombs99
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Quote jcombs99 Replybullet Posted: 01 Apr 2015 at 2:05pm
B
   8cm sounds like the same mess I had 7 years ago .Yes you are most correct like looking for a needle in a haystack and it's all in the doctor's skill . One Fool I should say doctor did 2 scopes and 26 biopsies and missed the LGD,HGD my Halo Gi found right before Halo . The reason my doctor and me likes a yearly scope is because What If you miss the needle in the haystack it's four years it's been changing .I would be paying for a yearly scope by another doctor at least and I hope it's nothing worse .
Lots of video on Halo .Sedation has worked like 20x for me it's all up to the doctor skill.

CHEERs
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chrisrob
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Quote chrisrob Replybullet Posted: 02 Apr 2015 at 12:10pm
I know of one person (out of the hundreds I hear of on the various forums and facebook groups I monitor daily) that this happened to - whose non-dysplastic barrett's had escalated between scopes and she was treated successfully. With a 0.2% p.a. risk of progression each year, there will always be that 1 in 500 but it's too low to worry about. Regular scoping every few years will pick it up early enough to treat.
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jcombs99
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Quote jcombs99 Replybullet Posted: 02 Apr 2015 at 8:12pm
Chris
    Your forgetful I'm not ..Lizthebob   post 18/Oct/2014 /11:18...That is one of 3 or 5 in the time I've been here who went to CANCER in 2 years .. What they ALL stated " I did what the NHS told me and it went to Cancer "..
   I work I don't have time to look up the others .
HGD Jeff
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lizthebob
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Quote lizthebob Replybullet Posted: 02 Apr 2015 at 11:00pm
Yes it was me.
Went from no dysplasia to low grade in the 2 year gap. Then low to high in 6 months and then to cancer stage 3 in 2 months. But I may have had the cancer when they diagnosed high grade. When they did the rescope two months later the endoscopist thought he saw a nodule and so biopsied it and sure enough that was cancerous. What surprised everyone is that it was at stage 3 (out of 4). And I was only 40. However that was 4 years ago and I'm still here!

Edited by lizthebob - 02 Apr 2015 at 11:02pm
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chrisrob
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Quote chrisrob Replybullet Posted: 03 Apr 2015 at 8:28am
I knew it was Liz I was referring to previously but my habit is not to name people unless I have their permission first.

Why Barrett's can suddenly escalate in a very small number of cases is unknown but the subject of much research.
(One factor already shown to be relevant is your blood group. Rhesus negatives are more likely than rhesus positives: it's to do with the pooling of Nitrous Oxide at the OGJ.)
Papers have been produced that say for most patients we're scoping too frequently.

This news item may be useful.

My Barrett's has remained unchanged for over 20 years and I'd be quite happy to wait longer than my present 2 to 3 years between scopes.
Various stages of the BOSS (Barrett's Oesophagus Surveillance Study) trial have been on-going for a number of years whereby patients may opt for regular surveillance scoping as per usual or for "scoping on demand" whereby they do not receive regular scoping but can be scoped if they feel their symptoms have changed.
And a new BOSS trial has been proposed: "Barrett's Oesophagus Surveillance versus endoscopy at need Study (BOSS): protocol and analysis plan for a multicentre randomized controlled trial." just a few weeks ago.

The author of the study on blood types referred to above, herself a Barrett's sufferer and a professor of epidemiology, maintaining the UK Barrett's Registry (UKBOR), agrees that too frequent scoping may not necessarily be a good thing per se but is reassuring for the patients.

Edited by chrisrob - 03 Apr 2015 at 8:31am
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jcombs99
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Quote jcombs99 Replybullet Posted: 03 Apr 2015 at 2:16pm
    My doctor has a Registry too and I think it's the largest in the US . He also keeps it up to date unlike most others.
    In a nutshell what their trying to do is bring down the cost of treatment by not scoping or scoping when the patient has trouble . Which could be to late most of the OC cases I know had no idea they had LGD,HGD too. Now as far as the blood test I'm in the US test for that but I'm sure my brothers aren't (DNA).This is all in the very early stages or the NHS would do that and forget the scopes .
   Remember some of the greedy ins. companies will pay for a yearly scope in the US and will ablate barretts with no LGD or HGD .The reason is you treat the patient not the masses and it's less costly to treat it early BUT the NHS doesn't think so.
    There is very low risk in doing a scope (10 min) and IF you don't agree with the NHS you go to doctor and let him do a one year scope and the NHS the other then you will have fewer misses and @ no cost to the NHS like I would do. What they should do is bring down the cost per not EXTEND the time frame to save money.

Jeff
    
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chrisrob
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Quote chrisrob Replybullet Posted: 03 Apr 2015 at 2:45pm
I'm sorry Jeff but you have misunderstood. This isn't an issue where the NHS are just saving money. The guidelines are produced by the British Society for Gastroenterology (who work closely with the American College of Gastroenterology). The NHS chooses to follow their recommendations.

The news item linked to above reports the presentation that Dr Rebecca Fitzgerald gave at the 2014 American Society for Clinical Oncology Gastrointestinal Cancers Symposium in San Francisco.

The reality is logistics.
It is estimated there may be nearly 5 million people with Barrett's in US (and nearly 1 million in UK). We need to identify them before their condition can progress (if it's going to) in order to reduce the number of deaths to oesophageal adenocarcinoma.
If we did identify them all, it would be impossible to scope all of them - even every few years, let alone every year.

In UK, there are presently 30 unfilled vacancies for upper GI gastroenterologists. In Southampton, one of the three main centres for upper GI treatment in the country, we need another 3. Those we have work most weekends already.

It's not to save money that scopes are less frequent than many would like. We have to make decisions based upon likely risk. Those most at risk need to be scoped more frequently than those at least risk. I put myself in the latter category so would be happy not to be scoped as frequently as those who are at higher risk.

If, using the vast amount of data collected in registries (and UKBOR is the world's largest), we can identify risk markers, it will help identify those for whom endoscopy is most needed.

The UK health system is adjudged to be the most efficient in the world (probably because of the swingeing cuts it's had to bear over the years) but exists to cater for the health of everyone not just those who can afford it.

The other hope is cheaper screening tools (like cytosponge) will enable more testing to be done.
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lizthebob
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Quote lizthebob Replybullet Posted: 03 Apr 2015 at 8:26pm
That's really interesting Chris. I have to admit that despite all my treatment I have no idea of my blood group.
When I was diagnosed I was contacted by Dr Rebecca Fitzgerald and asked if myself, my parents and my son would send blood samples and fill in a detailed questionnaire as part of a study. I never thought anymore about it but maybe it was to do with that study.
I still wonder about the gene side of it as my son was born with TOF/OA. His oesophagus ended in a pouch and the trachea had a fistula with the stomach. SO as a family oesophagus plays a big part!
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bluetobits
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Quote bluetobits Replybullet Posted: 10 Apr 2015 at 11:53am
Still awaiting results - Easter holidays no doubt delaying the process.

Thank you to all for taking the time out to offer advice/experiences - much appreciated.

Would still like to hear from someone who has been through the HALO process as I have had procedures before where the view from those who haven't had it lulled me into a false sense of security.

Still can't understand why the procedure for sedation is not 'nailed down' such that each patient is not given the correct sedation such that it is no different to being awake during it.
Surely follow up should highlight what dosage will be required on an individual basis such that you may have a bad time the fist time your scoped but on reporting this a different drug/dosage is applied second time.
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teacher man
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Quote teacher man Replybullet Posted: 11 Apr 2015 at 6:16pm
I had it, no issues what so ever. None! Glad I did it.
I dint feel anything.
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