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Newlt diagnosed, 30 years old

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Barrett's Oesophagus
Forum Discription: Your Questions about Barrett's Oesophagus
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=1975
Printed Date: 17†Dec†2018 at 1:35pm


Topic: Newlt diagnosed, 30 years old
Posted By: Alex_Mc
Subject: Newlt diagnosed, 30 years old
Date Posted: 14†Sep†2018 at 2:05pm
Hi everyone,

I had an endoscopy on Wednesday and it was identified that I had islands of Barrettís, C4M4. I am awaiting results of biopsies but have to have another endoscopy soon as they were only able to take one lot. After what seemed like an eternity on the bed I started panicking which quickly spiralled and they had to end the procedure before they could get everything they wanted. I have been told to have sedation next time but really not sure this will help - it was quite traumatic as I motioned 3 or 4 times to stop and it wasnít until my HR was in the high 160s that they finally did. I just felt like I couldnít breath and was retching constantly. The way the NHS handled this has filled me with dread to be honest. Theyíve basically told me Iíll be on my PPIs for life, handed me a leaflet and sent me out the door. I have been an absolute mess since. Iím 30 and have been on PPIs for about 4 years, though my main symptom is I can get very burpy after food. Reading all the articles out there has scared me even more. Yes they say statistically itís low but being diagnosed this young makes me feel lightning is bound to strike eventually and Iím going to miss my 18 month year old son growing up. It has totally knocked me for 6 and Iím struggling to cope. Iím not sure what more I can do, Iím not overweight, I donít smoke and rarely drink. Is this as much a death sentance as Iíve convinced myself it is?



Replies:
Posted By: NickH
Date Posted: 14†Sep†2018 at 8:48pm
hi alex,

i totally sympathise, i felt very much the same way when i was diagnosed 4 years ago but as you read more positive info, particularly on here, you'll settle down. It may sound very unlikely right now but trust me you do get a grip on the situation and can even see the positive side of being diagnosed. there will inevitably be others on here who will pick up your mail and respond with some very positive stats and advice which will make you feel alot better about it.one important thing to realise is that being aware of your diagnosis means you'll be in a much better position to deal with any changes as the regular scopes will give you a head start whereas with those large numbers of people who walk around unaware of their condition don't find out till it's too late. Treatment and understanding of barretts is progressing all the time and there are high success rates amongst those who catch worrying changes early on so you could view yourself as one of the lucky ones in a way?

there will be others more versed in the stats contributing to this thread shortly i'm sure but in the meantime try to get some perspective as hard as it may seem, from my experience that feeling of dread does recede and you'll be able to get a better handle on your condition.

this is a great forum where you'll find lots of helpful and positive information. also, with regards to your endoscopy, i've never had sedation but from those people i've spoken to who have it works a treat, you hardly notice whats going on and then its all over so don't worry about that too much either!

all the best
Nick


Posted By: chrisrob
Date Posted: 15†Sep†2018 at 2:11pm
Hi Alex,

Sorry you had a bad experience with your endoscopy. Most people do opt for sedation which causes many to actually fall asleep and know nothing of the procedure. I've had dozens of scope (without sedation). They're not pleasant but keeping calm and thinking yourself in a "good place" helps and, although it seems a lifetime, it's over in a few minutes.

As Nick says, it's actually a positive thing you have been diagnosed.

Although there is a small risk of Barrett's progressing towards cancer, it is a very small risk. Very simply, around 7500 people in UK develop oesophageal cancer each year. We don't actually know how many have Barrett's but, according to some figures, it could be as many as 3 million meaning the risk is 1 in 400.
However, those of us who have Barrett's are the lucky ones. We'll receive acid suppressant medication which probably reduces the risk by 71% (See the research evidence linked https://sites.google.com/site/downwithacid2/home/addenda/ppi-evidence#TOC-Do-acid-suppressants-prevent-cancer- - here ) and receive regular scopes every few years to ensure it doesn't progress (dysplasia). If pre-cancerous changes are ever found, your Barrett's can be https://sites.google.com/site/downwithacid2/home/treatment/procedures#TOC-Radiofrequency-Ablation - ablated . It's those who have Barrett's and don't know who are the ones more likely not to know until it's too late.

Also, the per annum risk isn't cumulative so doesn't increase with time. In fact some research has shown, if you are going to develop cancer it's more likely in the first year or two after diagnosis. I've had my Barrett's for at least 24 years and probably much longer.

In the meantime, You may find this free encyclopaedia useful: http://www.downwithacid.org.uk - Down With Acid . If you'd like a printed copy, just ask. (You may send me your address by a private message or email chris@chrisrob.co.uk.)

All the best

Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Alex_Mc
Date Posted: 15†Sep†2018 at 6:05pm
Thank you both for the replies. Knowing itís not a cumulative risk and that there are people around who have had this over 20 years is exactly what I need to be hearing right now. I hope you are right about the ďdreadĒ eventually passing as it honestly feels like life has just come to an end right now. Iíve suffered from anxiety for the last few years so this is exactly not what I needed! I will let you know what the consultant says in a few weeks. Alex


Posted By: steveb8189
Date Posted: 17†Sep†2018 at 12:09pm
Hi Alex

I know exactly where you're coming from. I was diagnosed a few years ago now and had exactly the same concerns as you.

There are people around on here who have had it for over 20 years which is great but there is a much bigger picture. There are millions of people in the UK that have Barrett's and the vast majority will have it until they die of something else completely unrelated. You would be unlucky to develop cancer within 50 years so plan for the more likely outcome of you needing a pension and retirement income!

Steve


Posted By: Alex_Mc
Date Posted: 26†Sep†2018 at 4:43pm
I've gone into a bit of panic mode again...the hospital has just rang to schedule in my follow up appointment...I didn't expect a phone call and for them to get me in immediately (well, Tuesday)...I know its stupid but am I just needlessly thinking they've found something hence they've got me in this quick..I thought it would be weeks....?


Posted By: chrisrob
Date Posted: 27†Sep†2018 at 9:52am
There may be many reasons why you have a speedy follow up. They may have had a cancellation.
IF there's any cause for concern, they'll have found it soon enough to treat it.


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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk



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