Barrett’s Esophagus: I was having acid... - Oesophageal Patie...

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Barrett’s Esophagus

carrick22
carrick22

I was having acid reflux problems for quite a few years and recently (2 years ago) got diagnosed with Barrett’s Esophagus. Since then there has been no backup or review requests from the NHS to see if it’s ‘stable’ or progressing, but I always have this feeling of something or ‘bits’ in my throat that needs clearing? Has anyone got any verified information on ‘follow up’ times for further investigations to see the condition of the original diagnosis is progressing or not, as the case may be? Thks

25 Replies
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Hi, my son in law was diagnosed with Barratts 3 years ago and was told he would have 3 yearly check ups. I would speak to your GP if you are worried.

Good luck 😁

Thank you..

You should go back to your GP and get another Endoscopy if you have not been scoped for more than 12 months. Initially when Barretts is diagnosed you would expect regular checks to ensure it does not develop further although different areas deal with this in different ways - if you are concerned go and bug your GP for another referral- remember they have thousands of 'you's' and you have one- most GP's will have the opinion - if it isnt important to you it definitely is not to them given the pressure they are under every day.

carrick22
carrick22
in reply to rayw55

I realise there are thousands of ‘you’s as you put it, but my concern is with myself and my family right now & I me & my wife have had cancers ‘missed’ in the past, so the NHS is not infallible, but your comments are noted.

rayw55
rayw55
in reply to carrick22

That's my point really. We must make sure that we take steps to make sure our concerns are acted on by GPs as many do not realise the impact the this can have on us further down the line.

Barrett’s Oesophagus - from the makers of Liquorice Allsorts... When I visited my GP after a single instance of temporary discomfort when swallowing a tablet, he put me straight on the ‘cancer pathway’ that guarantees a hospital examination within two weeks.

This was taken very seriously, despite my attempt to cancel the appointment because I thought I was making a fuss! I had an endoscopy, then a second, which revealed that I had a small tumour and I’m now recovering well from an oesaphectomy (spelling?) which proved to be completely successful without recourse to chemotherapy.

So my strong advice is, go to your GP and request that he put you on the said Pathway immediately. If he dilly-dallies, be a nuisance!

Good luck!

Andy

Thanks Andy, will try, but you know the NHS these days, anything to save money. Even at the expense of lives sometimes..

I myself have Barrett’s , you must have Barrett’s surveillance about every two years is usually what they recommend, I had endoscopy last February, everything was fine , but in November I had another one because of coughing and feeling food stuck in throat, luckily it was nothing to worry about, but you must go back to docs , because you should be scoped , don’t let them fob you off good luck

Hi Carrick,

I was diagnosed with barretts in Dec 2017 as food was sticking ( meat first then bread) from September on. Two endoscopes and was told barretts no dysplasia and sliding hiatus hernia. Put on ppi and referred to dietician. Symptoms worsened over weeks and Christmas 2017 was unable to eat anything. Five months of not eating and third endoscopy in six months found a 65mm tumour at goj . I was never on cancer pathway and it was not mentioned until April 2018 when tumour was found where I was pointing to at breast bone area of chest. Barretts is normally monitored with scope up to three years. It does vary if any dysplasia is evident. The biopsy protocol is hit and miss a d only samples a tiny area of oesophagus. Do not panic but at the same time ask as many questions about the condition as you can. My diagnosing hospital told me afterwards that biopsies proved I didn't have cancer when they looked and I developed it subsequently. So I didn't have cancer but had symptoms then 8 months later developed a cancer that matched my symptoms. I wish you well. I had a feeling prior to having issues with oesophagus that if I ate chilli crisps it would feel sometime later that bits of throat were falling off if that makes sense.

Regards

Paul

Your follow up will depend on the size (length and circumference) of your BE but is usually 3-5 years in the UK, unless it’s larger when it can be 1-2 years, You should also be taking regular proton pump inhibitors (PPIs) to reduce stomach acid. Lifestyle changes also help eg smaller but more frequent meals, avoiding foods that trigger reflux, not eating 3 hours before lying down and raising your shoulders and head at night. However any feelings of food sticking or difficulty in swallowing should be investigated earlier, and might be considered a red flag. So see your GP. Best wishes.

When were you diagnosed with barratts

All, thanks for your very informative & helpful replies. My diagnosis was Jan 2018 which at the time they said there was no sign of dysplasia, but since then I have the feeling of my throat not 'clearing' and constant dry coughing. I gargle with salt & warm water which often brings up 'bits' of 'orange' looking phlegm (sorry), but the feeling never disappears. I try to do all the 'good' things where food is concerned and night time keeping the head elevated. Also I now get slight pains in the breast bone at the lower sternum. Going to see if I can see my GP again this week, but as with the UK NHS all over, Cornwall's in the same boat these day's. Thanks again

Bunny69
Bunny69
in reply to carrick22

I was told after eight months of seeking help I had cancer, they also said if they had found it sooner it would/ wouldn't charade a difference. I had a mass on c.t scan that they said was a hernia. Pet scan lit it up as cancer . I felt food sticking adversaries and brought it back up in thick saliva straws . Sometimes people ignore the symptoms as a patient doesn't fit the demographic. I had several red flag symptoms but at 47 I was too young for this type of cancer. Most people will have no symptoms for Barrett or hiatus hernia, so people with symptoms should be examined very closely. How GP can speed things up and get you sorted

Paul

Judley
Judley
in reply to carrick22

Your throat clearing and dry coughing also sounds like silent reflux

Hi I have been I’ll for about 3 months, problems swallowing and like you feeling that my throat was swollen and bits stuck and swallowing eg tablets, making me choke. When I also was coughing up blood I saw the doctor who immediately referred me to ENT within a couple of days I had a camera down past my voice box and a chest X-ray and was told everything was clear. I went for. Barium swallow and out of the blue got a letter from Oncology. It was devasting as some of you,will know. 4 nights with no sleep my personal back account closed and all transactions moved to my joint account. Letters sent about pension death benefits and went to an appt expecting the worst. Only to be told that all tests were clear and the letter was a clerical error!!!! I got an apology from the hospital and to be fair I was so relieved, I just took it on the chin and didn’t make a fuss. Thankfully I am back to about 95% and have slept 3 full nights for the first time in 3 months. After about a fortnight I still haven’t heard back from my local doctor who was sent a letter from the ENT consultant so I intend to follow that up. I was down for a 5 YEAR Barrats referral but will insist on closer management than that. My throat is still not 100% but it has magically mostly cleared up. With a lack of input from the doctor I have self medicated on Strepcils, Tyrozets and Salt water gargling which makes me puke but does the trick.

I’m afraid I roughly the same experience with letters from the consultants, where the first letter I received said, there was no evidence of Barrett’s, only to receive another letter 5 days later saying they had a diagnosis of Barrett’s Esophagus, with no apology. I was down for 3 yearly checks, but after the last few weeks, I’ve now made another appointment with GP to get something done..hope you get somewhere..👍

So glad to hear it was an admin mistake, best of luck

Here in the USA North Carolina I’m on the every 3 yr plan of having endoscopies. Colonoscopy is now every 5yrs now since the ulcerative colitis is now in deep remission. Your gastroenterologist should be monitoring your condition on some type of regular schedule.

I probably had undiagnosed Barratts before it progressed to cancer so just go and make a nuisance of yourself and don't take no for an answer, you have to demand regular checks, don't allow yourself to be fobbed off

I’m in the states so may be different but at first the gastroenterologist who diagnosed me prescribed protonix after doing the endoscopy and diagnosing the Barrett’s. Then we moved went through a nasty divorce so it got put on hold. I was diagnosed in early 2000, moved then divorced in 2001 it wasn’t until 2002 that I got on a regular schedule of having endoscopies every year for several years and 2010 got on the every 3yr plan. Your gastroenterologist should be monitoring you every 2-3yrs for any changes in the Barrett’s esophagus. I hope that they get you on some regular schedule in following the Barrett’s esophagus.

carrick22
carrick22
in reply to Sarahvit

Thanks. They’ve agreed a way forward of sorts. Blood tests first then an endoscopy, but not under urgent criteria, so in UK that means anything up to 18 weeks waiting time. In the mean time it’s Ranatidine, Gaviscon etc.

Buddy1962
Buddy1962
in reply to carrick22

Here in the US ranitidine has been proven to cause Cancer, so as not to suggest meds maybe.

You are welcome. Hopefully the process well go faster and you get into a schedule with a gastroenterologist in monitoring your Barrett’s.

insist on regular check ups. I had endoscopy every two years - thankfully I did as my Barrett’s had led to cancer which was picked up early. Had oesophagectomy in 2012 cancer free 8 years on.

Thanks Stuart, got an appointment again 24th, & will push then, but as she said last time 18 weeks wait time.

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