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steelee
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Quote steelee Replybullet Topic: Diagnosed with a raised node
    Posted: 25 May 2016 at 2:12pm
Hi all.

I was diagnosed with Barrett's a couple of years ago but the hospital didn't give me much advice and never followed it up so in December I got my GP to refer me again as the reflux was getting much worse despite taking 20mg of omeprazole daily.

The same hospital did another scope and said they had found some LGD but it was up to me what I wanted to do, they suggested another scope in 12 months which I was not happy with so I got referred to another hospital. I had a scope 2 weeks ago and was called in to see the consultant this morning, he has told me there is LGD nut also a raised node at 34cm which is HGD and I am going in on Tuesday where they are going to try and remove it using EMR, I was wondering if anyone here has had this done and what to expect?

Many thanks   
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chrisrob
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Quote chrisrob Replybullet Posted: 25 May 2016 at 2:34pm
Hi Steelee,

Sorry to hear of your dysplasia diagnosis. Fortunately it doesn't sound too bad.

There is a slightly increased risk of progression towards cancer if you have LGD and a higher risk if you have HGD.
It does need to be addressed. If it's only a small nodule of HGD, endoscopic mucosal resection should be able to deal with it.

Read about EMR here or watch a short ideo of the procedure here.

You are likely to be offered a combination of EMR and Radio Frequency Ablation which would remove all the Barrett's which would probably be the safest approach to minimise any chance of progression to cancer.
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jcombs99
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Quote jcombs99 Replybullet Posted: 25 May 2016 at 5:26pm
Steel
Mate ur in really bad shape the next step is cancer so the NHS didn't do their job again.
1) U should've been on a much higher dose like 40 or 60 mg a day of Omeprozole or a different drug and this may have never progressed to LGD or HGD your doctors fault.
2) This should've been REMOVED ( ablated by RFA (Halo) while LGD not wait till it gos to HGD or cancer .The NHS fault not yours.
3) Hope to God they get ALL the LGD and HGD out when they EMR u and then Halo the rest out .

www.treatbarretts.com great honest site no NHS there !!!

I've FIVE HALOs and 8cm of barretts REMOVED which was LGD and HGD every thing I run by my Doctor who had the first Halo machine and has done thousands of them .
   Your first nightmare is Cancer the second is HGD which may or may not change quickly .
Size doesn't matter if it's barretts,LGD,HGD it can ALL turn to Cancer in time .
   Do what I would do tell your doc to TEAR (EMR) the HxLL out of and that U feel no pain just like I did .
    U should also have C-T Scan and a EUS like I did to LOOK for Cancer that may have been missed by Ur doctors eyes LIKE I HAD .
    Now IF they ever get your O back to normal by EMR and Halo you will get SCOPED every 3 to 6 months like I do for the rest of your life like I do . I fly 500 miles to my doctor to get it done right .
    Remember also Five years ago they would just removed ur O and say that's all we can do

Good Luck
CHEERs

Jeff
    

Edited by jcombs99 - 25 May 2016 at 6:06pm
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steelee
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Quote steelee Replybullet Posted: 31 May 2016 at 8:04pm
Had the EMR today and they have concluded it is an IMC, even have pics of before and after!! booked in for some RFA on July 11th and now awaiting pathology results, bit painful but not too bad, am now a bit worried but can do nothing but wait
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jcombs99
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Quote jcombs99 Replybullet Posted: 31 May 2016 at 8:21pm
Steel
That's good their moving . But very careful so the O can Heal if it doesn't then no RFA .It takes like 3 to 4 weeks for RFA to heal I have no idea how long for EMR but depends how much they ripped out . I would live on protein drinks like I did for RFA.Take painkillers if they gave them to U.
Hope for the Best .
Been there no fun.
CHEERs
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steelee
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Quote steelee Replybullet Posted: 31 May 2016 at 8:46pm
Took a big chunk but as they are saying it's intramucosal carcinoma I'm not really sure what that means as was very sedated and can't really remember what they said.....have looked on google but so much stuff I don't know what's what.
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jcombs99
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Quote jcombs99 Replybullet Posted: 31 May 2016 at 8:58pm
Steel
Go on www,cancer.org,,Take a GOOD look @ that report and CALL the Doc . They can look @ it in the room or have it the next day . U should've brought someone with U as another set of Ears.U may have heard him wrong so SEE the report then google !!!!!!!! Make sure U save the reports in order I use to sent out to other doctors so I would make 5x . U can't trust them and I had Doctors who didn't get ALL the tests SO I use to bring EVERYTHING with me.

Edited by jcombs99 - 31 May 2016 at 9:22pm
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steelee
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Quote steelee Replybullet Posted: 31 May 2016 at 9:24pm
Thanks will have a look and didn't hear wrong as have the report in front of me.:-(
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jcombs99
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Quote jcombs99 Replybullet Posted: 31 May 2016 at 9:30pm
Maybe they got it all
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steelee
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Quote steelee Replybullet Posted: 09 Jun 2016 at 12:43pm
Just had a call from the hospital to say consultant wants to see me next Wednesday at 9am.......assume that's not a good thing
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