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steveb8189
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Quote steveb8189 Replybullet Topic: A few thoughts
    Posted: 30 Aug 2018 at 2:30pm
Hi all. I was originally diagnosed a few years ago and spent a lot of time stressing about my diagnosis. One thing I found useful was to write down some logical thoughts to keep me focused. I call it my mantra and it lives in my desk drawer at work should my mind ever wander and anxiety sets in (which rarely happens nowadays). In case it is of use to anyone feel free to make your own copy

What can help:
Eat well
Eat a tnormal times
Don't stress
Improve posture
Go to appointments
Keep engaged with other things
---Plan for no progression as that is FAR MORE LIKELY

What doesn't help:
Reading stuff on the internet
Worrying
Getting absorbed in thinking about it

You should think:
Risk in 30 years is low <15%
Ablation works well > 80%
You are lucky to be under surveylence
New research is happening all the time
You are a low risk group. Weight/SSBE/Age/PPI/Surveilence/Non-smoker

Remember..

If you never get cancer then you would regret spending your whole life worrying about your chance of getting it
If you do get cancer you would regret wasting your time or burned relationships worrying

Basically, you can never be better off by worrying about this!
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Zippypop
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Quote Zippypop Replybullet Posted: 31 Aug 2018 at 10:59pm
Hi

Is the 15% per person or taken from an average number of people diagnosed?
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steveb8189
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Quote steveb8189 Replybullet Posted: 01 Sep 2018 at 2:27pm
Don't get hung up on that - I nearly took it out before posting. That's my own maths based on age etc...
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chrisrob
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Quote chrisrob Replybullet Posted: 01 Sep 2018 at 3:02pm
Risk prediction is a difficult one.

In UK there are about 64 million people. Around 8 thousand develop oesophageal cancer in a year giving a risk in the general population of about 1 in 8 thousand each year.

We don't know how many have Barrett's in UK and estimates vary between 200,000 and 3,000,000. I am more inclined to believe the higher figure which correlates nicely with Mayo Clinic in US who suggest 5% of the population have Barrett's. (Although in a letter I saw recently, it was hypothesised that actually everyone may have just a few (possibly dormant) Barrett's cells residing in their oesophagus ready to develop to protect us if necessary.)
This means the risk of progression to cancer is probably about 1 in 400 per annum.

However, the risk probably isn't cumulative. ie the longer you have it probably doesn't mean the greater likelihood of developing it - cf tossing a coin; 6 heads in a row doesn't mean it's more likely to be tails next time. (In fact research has shown those who are going to develop cancer usually dd so in the first few years following initial diagnosis of Barrett's - so the longer you have Barrett's, the lower the risk perhaps.)

Heartburn Cancer UK have come in for some criticism as their homepage suggests "Around 10% of those [with Barrett's] will progress to Oesophageal Cancer" though they are predominantly associated with oesophageal cancer research with Barrett's as a secondary concern. However, Barrett's Oesophagus UK who manage the Barrett's registry and whose primary concern is Barrett's, say the figure for lifetime risk is much lower suggesting possibly 5%.

The truth is, we just don't know. What we are relatively confident of, however, is taking PPIs probably reduces the risks of progression and regular surveillance every few years will probably show pre-cancerous changes (dysplasia) early enough for ablative therapy to remove the mutating cells.
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NickH
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Quote NickH Replybullet Posted: 07 Sep 2018 at 10:46am
I like your suggestion Steve.

I spend far too much time thinking about my diagnosis. I invariably end up thinking on the brighter side but usually go through the same anxious thoughts before remembering the positives such as 'we're the lucky ones being under surveillance, progression to OE is relatively low etc'. the idea of having the positives written down is a good one, i'll probably do something similar. I sometimes find reading previous letters from consultants uplifting as they tend to keep positive and always say there's nothing to really worry about as long as surveillance/medication is kept up and certain lifestyle changes are adopted.

thanks for the post   
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