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frusso
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Quote frusso Replybullet Topic: New Diagnosis - Next Step Questions
    Posted: 15†Apr†2018 at 7:15pm
Hi all, I was very happy to find this forum with all of the great advice and encouragement. Like many, I was just diagnosed and a little nervous. My story is as follows: 39 year old male, no GERD symptoms, but caught a cold in December which turned into a sinus infection but then after treatment had terrible stomach pain and coughing and phlegm. Blood tests all came back negative but lost 20lbs. Well I went for an endoscopy/colonoscopy and came back with nothing major in the colon - just IBS, but with chronic reflux and ND BO due to HH and some impairment in functioning of valve. I am currently in Mexico for work assignment which I mention because of some of my questions. The dr. In the report described it as an irregular z line, and then upon follow up said it is just a few mm. Of 7 biopsies, 1 showed IM. The Dr. here immediately recommended the fundo surgery, and put me on lanzoprazole and sucralfate.

As I see is common, I am worried about the diagnosis with something I had never heard about. I know the odds of it developing to cancer are low, but right now I look at my family (kids are 2 and 4) and canít help but be petrified.

Which leads me to my questions:

- It seems like in the research I have read BO length is defined at time of initial scope and doesnít tend to change to much - is this correct? Someone with long segment has it just appear all at once? With PPIís and change in lifestyle, mine would remain SSBO?

- It seems like progression is usually early - is this also correct? If so is this first year the most critical and if so, what are the usual next steps after diagnosis? When should I have a follow-up scope.

- Given the description by the Dr. here as irregular z line and BO of a few mm - would U.S. doctors even perform a follow-up? I ask this because I am scheduled to return to US in July and was thinking of going to a BO specialist, for their thoughts and perhaps the follow-up scope. When is right timing 3 months, 6 months?

- On that same line - anyone have thoughts on where to go in south jersey - I was thinking either Penn or Jefferson in Philadelphia.

- As to the fundo, I know Chris indicates that the PPIs reduce the acid but donít stop the reflux and that the fundo Should be considered. I just feel like if the PPIs and lifestyle changes work, is a surgery necessary?

Apologies for the long post and thanks in advance for your thoughts.

Frank
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chrisrob
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Quote chrisrob Replybullet Posted: 15†Apr†2018 at 10:42pm
Hi Frank and welcome to the forum.

Sounds like you have a good understanding of your condition.
If you are able to keep the reflux under control and the PPIs are working, I wouldn't think fundoplication is necessary. Most with this condition manage their lives quite well without a fundo. Perhaps the Mexican doctor hopes he'll benefit from your custom?

An irregular z-line and SSBO would normally not require rescoping for a couple of years.

See what your US doc thinks when you go back.

All the best
chris
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frusso
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Quote frusso Replybullet Posted: 16†Apr†2018 at 5:38pm
Hi Chris,

Thank you for your reply.

I was put on 30mg. Lanzoprazole. Is this a standard "out of the gates" dose to try to control the symptoms? Given I never had heartburn or other symptoms, how does one know if its being effective?

I will see what the doctor says once I get back to the US, but just to clarify your statement, given the SSBO would one normally not have a follow-up within the first year and simply move to the 3-5 year monitoring? From the literature I have not been able to be clear on that point.

Also, any tips on getting past the fear caused by the initial diagnosis?

Thank you
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chrisrob
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Quote chrisrob Replybullet Posted: 16†Apr†2018 at 5:58pm
Yes, 30mg lanso (equiv to 20mg omeprazole) is the standard low maintenance dose. If you feel symptoms of acid refluxing, it can be doubled.
If you experience no symptoms, its continued use is stll recommended as it probably has a chemo-protectvie effect reducing risk of progression to cancer by 71%.

This link will take you to the US guidelines on diagnosis and management of Barrett's Esophagus.
Similar to the UK guidelines from where the following flowchart is copied:


Advice I give to those anxious about their diagnosis is to think of Barrett's as an untrustworthy friend. (See "My Friend Barry" here.)
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steveb8189
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Quote steveb8189 Replybullet Posted: 17†Apr†2018 at 9:16am
Originally posted by frusso

It seems like progression is usually early - is this also correct? If so is this first year the most critical and if so, what are the usual next steps after diagnosis? When should I have a follow-up scope.


I have yet to find any evidence that progression happens at any specific time. The research shows that you have the same risk of progressing each year you have Barretts. What you do see is that a lot of the studies report progression is much higher in the first year but that is NOT because there is a higher risk. It is because people are misdiagnosed during their first scope and something more sinister than Barretts is missed. That is the reason most people are asked back within 12 months to confirm the diagnosis.

As Chris said, rescope within 12 months to confirm and then see how you get on with the PPIs. I would definitely not get the fundo treatment abroad and it sounds like there is no rush for it in your case.

Welcome to the site!
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frusso
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Quote frusso Replybullet Posted: 17†Apr†2018 at 4:23pm
Thank you Chris and Steve for your replies.

I like the untrustworthy friend anology. I guess now comes th hard part of getting used to having him hanging out with me, and trusting that the surveillance will catch him if he misbehaves.

The explanation for the first year makes sense. Given that, does it make sense to get a follow-up sooner rather than later (3 months vs. 12 months)? basically wanting to know if waiting until I am back in July makes sense to see the Dr. or if I should head back sooner.

And if all BO has the same risk of changing why with SSBO do they say 3-5 years follow-up while with LSBO it is usually 2 years?


Edited by frusso - 17†Apr†2018 at 4:32pm
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steveb8189
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Quote steveb8189 Replybullet Posted: 17†Apr†2018 at 4:47pm
I wasn't that clear... There are many factors that seem to effect the risk of progression including gender, smoking, length of Barretts section, weight, presence of metaplasia/dysplasia. I meant that for any individual the risk remains the same each year.

You asked another question about the length changing which is something I've wondered about as I have SSBO and would rather it doesn't get any longer. From what I have read it seems most peoples length is stable over time and there is little evidence of it increasing. There is evidence of it regressing naturally but never entirely. Mine has gone from C2M3 down to C1M2 with the use of PPIs but there is must debate in the literature as to what has actually happened. It may be that new "normal" tissue has just grown over the top of the existing Barretts. A lot more research is required here...

As for your scope. The advantage of leaving it later is that the PPIs will have kicked in and worked to reduce the acid and cut down the inflammation. This will mean the biopsies taken next time will be more targeted and easier for the histologist to describe. If you are worried it may be worth going in 6 months but in general these things take time to heal. Did you see the images from your endoscopy? My Dr described my initial ones as a "war zone"...
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chrisrob
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Quote chrisrob Replybullet Posted: 17†Apr†2018 at 5:56pm
This study from Sweden in March 2017 suggested, risk of progression from Barrett's to Cancer "is highest in first year after diagnosis".

The length of Barrett's very rarely changes. Of course, if you continue to reflux acid and bile as before, attacking other points in the oesophagus, more Barrett's cells may form.

The problem is measuring the length of Barrett's. The oesophagus is an elastic tube and the very porcess of pushing a scope down it or withdrawing it will stretch or contract it to an extent. Add to that that measurements are made by reading the markings on the sleeve of the endoscope (which are every 5 cm) and judging to within half a centimetre what that measurement should be, and you egin to see why it's quite easy for the length recorded by successive scopes may apparently vary by a centimetre.

Barrett's, however, is a permanent addition. It will not regress or go away. Any inflammation around the area may reduce so the boundaries are not always clear cut.
Those who claim their Barrett's has gone (or been "healed") actually delude themselves. It is very possible for the Barrett's to have been misdiagnosed originally (especially if the length is very small and there is an irregular z-line. It also happens that a new mucosal layer forms over the Barrett's cells hiding them beneath.

The only way to get rid of Barrett's cells is by ablation but, since it is really supposed to be helping the body, it's usually best to let it do its job (but keep an eye on it).
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steveb8189
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Quote steveb8189 Replybullet Posted: 18†Apr†2018 at 10:05am
Chris - that is exactly the sort of paper I was raising concerns about.

This is the actual conclusion from the report:

"This population-based study indicates that OAC is primarily diagnosed during the first months following an initial diagnosis of BO. This could justify a changed surveillance strategy of BO with a repeated thorough endoscopy shortly after initial BO diagnosis to identify prevalent early OAC or HGD."

Note that it talks specifically about the fact OAC is primarily diagnosed during the first months and not that progression is higher in the first year.

This is likely down to the fact the specialist failed to diagnose OAC on the first endoscopy rather than the fact is wasn't there and progressed.

Happy to hear a counterargument :)
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pylorius
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Quote pylorius Replybullet Posted: 18†Apr†2018 at 11:22am
Just seen this article and amongst other things interesting to note the development of molecular biomarkers

https://www.mdedge.com/gihepnews/article/160652/gastroenterology/model-predicted-barretts-esophagus-progression
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