Barrett's Oesophagus
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Bren
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Quote Bren Replybullet Topic: Very Confused
    Posted: 14 Apr 2013 at 6:06pm
Hey All

Would really really appreciate if I could get some feedback on my experience.

My GP sent me for an endoscopy in February last year because of reflux,they took a lot of biopsies. I got it done and didn't get any results directly from hospital, my GP just told me that I had moderate to severe inflammation. Anyway I had another endoscopy 8 weeks later after taking PPIs for the 8 weeks. Just before the scope the doctor said to me 'good news, you have no cancer'. My jaw dropped, why was he saying the word 'cancer' to me. He gave me a script for 40mg Losec and sent me home.

Almost a full year later (February 2013) I had an appointment with a new consultant (the other one retired) and he told me he strongly suspects that I have Barretts. He doubled my PPI to 80mgs and I have another endoscopy in 2 weeks time.

Seriously I am frightened, I really haven't a clue what is going on, I feel like the hospital has communicated very poorly in my case, very little has been explained to me.

I have two questions:
1) If I have Barretts surely the biopsies in the initial endoscopy would have given a definitive diagnosis? I don't understand why they suspect Barretts and are only telling me a year later, this is crazy.

2) I smoke, and I am forever trying to stop, I even did 3 Allen Carr clinics but to no avail. There is a new study from Queens University Belfast that says that smokers have double the chance of progressing from Barretts to cancer. Are there any further studies that yee are aware of?

Looking forward to your replies.

Bren
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Sandra W
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Quote Sandra W Replybullet Posted: 15 Apr 2013 at 11:06am
Hi Bren,
 
It's good that you have found this site.
 
Oh dear!!  I can understand why you are upset and confused - the hospital consultant and your GP should have given you a lot more info and explained things properly.
 
It can sometimes be difficult to confirm a diagnosis of Barrett's, since inflammation can sometimes look like Barrett's but isn't, which is why biopsies are needed to confirm the diagnosis.  However, it can sometimes take more than one scope or one set of biospies to get conclusive results and identify Barrett's. 
 
My case is a good example of this - I was seen for three years at two hospital in my local area.  I had five endoscopies with biospies during this time, all of which produced inconclusive results.  It was only after I was discharged and my GP subsequently agreed to refer me to another hospital in London that it was discovered that I actually had squamous dysplasia plus a small area of Barrett's!!!  I had HALO treatment for this in March last year and I'm now awaiting further follow-up.
 
Barrett's is a condition where the normal (squamous) cells in the oesophageal lining (mucosa) are replaced by intestinal (columnar) cells.  The replacement of one cell type with another is called metaplasia.
 
In rare cases, Barrett's can sometimes undergo further changes and develop dysplasia, which is NOT in itself cancer but is a pre-cancerous change and needs to be monitored and treated.  The most popular, every effective treatment today is radiofrequency ablation, otherwise known as "HALO treatment", which can remove Barrett's and / or dysplasia.
 
Barrett's is known to have the potential to develop into cancer, and this is why your doctor mentioned this with reference to your results.  However, the risk is very small in most cases.  Provided that you follow medical advice as regrds medication, lifestyle and follow-up, your condition should remain well-controlled and therefore very unlikely to develop any further. 
 
Your doctors should have explained the results properly and given you more info instead of scaring you by making a statement about cancer without giving further details.
 
The good news is that there is no dysplasia.  It is also good that now your doctor knows you have Barrett's, this can be monitored this in the future so that any treatment, e.g. HALO, can be arranged if necessary. 
 
You might find it helpful to google or look around the Barrett's Oesopahagus Campaign and Barrett's Wessex websites sites for further info about Barrett's, HALO treatment, etc, as background info can be helpful in understanding Barrett's and deciding what, if any, further questions to ask your doctor. Google can also be useful for checking out the meanings of medical words on reports, etc. and help you learn more about the condition in general.
 
As regards smoking, while it's a good idea to give up if you can, don't stress yourself out about this - or anything else, for that matter - as worrying will definitely NOT help your condition.  I smoke, too, and could never give up but have cut down to no more than 10 fags a day.  I don't drink alcohol and generally stick to a healthy diet, so I'm happy with that and don't worry about it. 
 
I hope this helps to answer some of your questions and help you feel more relaxed about your condition.
 
All the best,
 
Sandra.
 
 


Edited by Sandra W - 15 Apr 2013 at 11:14am
E-mail: swilliams888@hotmail.co.uk
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Bren
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Quote Bren Replybullet Posted: 15 Apr 2013 at 11:11am
Sandra

thanks so so much for your reply.

I just rang my gp and asked for some answers, it turns out that the hospital sent a letter to him last year explaining my situation and he neglected to forward it to me, in fact I have been with him a few times since for IBS stuff and he didnt mention it then either. I think maybe its time to get a new GP, which is a shame because I have been with him since I was a child.

The letter said that during endoscopy it looked like I have Barretts but the biopsies came back negative, the consultant said he is surprised by negative result so he recommended acid suppression and rescope.

So I dont know if I have it or not, oh I really hope I dont have it, god knows Ive enough problems as it is, ha. Will definitely keep you posted, and thanks so much for the info. I will definitely follow up on your suggestions regarding my own research.

Kindest regards

Bren
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Sandra W
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Quote Sandra W Replybullet Posted: 15 Apr 2013 at 12:10pm
Hi Bren
 
Thanks for reply. It's unfortunate that your GP overlooked to fill you in about the letter, but at least you will be having follow-up soon.  I hope you will get conclusive results this time so that you will know for sure whether or not there is any Barrett's.
 
Good luck, and let us know how you get on.
 
Sandra.
E-mail: swilliams888@hotmail.co.uk
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jcombs99
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Quote jcombs99 Replybullet Posted: 15 Apr 2013 at 1:13pm
Bren
    Get a copy of the doctors report from each doctor. Get a copy of the biopsies reports .This will tell you the length , if you have barrettes and the grade ..You want it written not second hand .

HGD JEFF
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chrisrob
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Quote chrisrob Replybullet Posted: 15 Apr 2013 at 2:42pm
Hi Bren,

Sandra and Jeff have given good advice.

If your Barrett's is non dysplastic (ie "normal"), and you can manage the acid with the Losec (omeprazole) and the reflux with lifestyle changes, you are one of us lucky ones who know we have the condition and will receive regular surveillance to ensure it doesn't progress.

You are on 80mg omeprazole which is high. The normal maintenance dose is 20mg and high dose is 40mg. Having said that, I was on 80mg for a few years so it's not that unusual. Howver, you may be more prone to side efeects of the medication.
I see you have posted other queries, which may be about side effects but I haven't read those yet.

Meanwhile for you and Sandra, I'm attaching some links regarding the smoking risk.
If you are able to quit, it'll make your condition easier to manage.

The heartburn-tobacco connection (from WebMD).

Cigarette smoking and high body mass index are significant, independent risk factors for esophageal and gastric cardia adenocarcinomas.

Tobacco smoking increases risk of esophageal, gastric cardia, and non-cardia gastric adenocarcinomas.

Changing patterns in the incidence of esophageal and gastric carcinoma. (from American Cancer Society)

All the best

Chris
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Bren
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Quote Bren Replybullet Posted: 15 Apr 2013 at 3:27pm
Chris Hey.

I was on 40mg for the last year, doc put me on 80mg for the last 2 months because he wants to make sure inflammation is healed before next endoscopy. Apparently I had extensive inflammation at the last scope. I hope to go back down to 40mg after the next procedure.

Thanks for the smoking links, maybe a good scare is just what I need to stop.

Bren
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jcombs99
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Quote jcombs99 Replybullet Posted: 15 Apr 2013 at 3:37pm
Bren
   Your under enough stress when things tone then Quit .It took me like 9 months to.
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Bren
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Quote Bren Replybullet Posted: 15 Apr 2013 at 3:41pm
Maybe you have a point jc, funny I just made a coffee and am popping out for a smoke this instant cos my boss just went into a meeting. Life is gas.
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Bren
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Quote Bren Replybullet Posted: 26 Apr 2013 at 7:56pm
Had scope yesterday, but more importantly had a good chat with doctor. Apparently I had biopsies taken on both scopes last year, I wasn't aware of that, thought they did it the first time only. Biopsies were negative on both occasions. Thats good news.

I've to wait another 3 weeks for results form the scope yesterday. However when I was leaving the nurse told me to keep taking 80mg of Losec for the next 8 weeks until I have an outpatient appointment with consultant. Until 3 months ago i was on 40mg a day and i think i will take 40mg from now on, my ass can i afford to pay for 80mg a day.

Any opinions are greatly appreciated.

bren
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