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Molly6460
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Quote Molly6460 Replybullet Topic: Dysplasia
    Posted: 24 Mar 2018 at 7:33am
I was told my biopsies were all benign but have now been told I have low grade Dysplasia what is the treatment for this and will these cells ever go back to normal I,m terribly anxious just as I start to get my head round one thing something else happens I keep waking up in the middle of the night feeling awful
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chrisrob
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Quote chrisrob Replybullet Posted: 24 Mar 2018 at 9:43am
Whilst still benign (ie not cancerous), dysplasia is a change that could possibly be the first change towards the development of cancer - though the risks are still low. (See this chapter in Down With Acid.)
Treatment for dysplasia that may be discussed with you, includes ablation therapy that will remove the Barrett's to prevent any further progression.

You may read patient's experience of ablation here.
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steveb8189
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Quote steveb8189 Replybullet Posted: 24 Mar 2018 at 11:58am
Chris - correct me if I'm wrong but I thought the normal approach was to perform biopsies again in a 6 month period to confirm the diagnosis of dysplasia?

Molly - my understanding is that it can be quite difficult to differentiate between non-dysplastic and dysplatic cells and so normally a follow up test is performed to confirm. Only then should treatment options be considered.
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Molly6460
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Quote Molly6460 Replybullet Posted: 24 Mar 2018 at 4:26pm
Thanks for replying the doctor has put me on 60mg of lansoprazole I was on 30mg before and I have to have another endoscope in 6 weeks time which is doing my anxiety no good whatsoever it's all the waiting for results I find very difficult have either of you had any treatment for Dysplasia.
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GrahamB
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Quote GrahamB Replybullet Posted: 26 Mar 2018 at 10:16am
Molly, the "patient's story" Chris pointed you at is mine so I thought I might chip in on the Ablation front.

First thing to say is that I am being treated privately (by an NHS specialist of course) but I don't think that should make any difference to the treatment path.

The view of Low Grade Dysplasia (LGD) has changed over the past few years. Previously Radio Frequency Ablation (RFA) was only recommended for High Grade but a series of studies showed that the long term outcome for LGD when treated was remarkably good. As a result NICE changed their guidance (with the help of British Society of Gastroenterology) to recommended RFA where LGD has been seen as present in two sets of biopsies taken six months apart and reviewed by two different, experienced reviewers.

In my research I have been a little surprised how some clinicians don't seem to know what the current guidelines say. If it hasn't been mentioned to you by your care team point them at the BSG guidance at https://www.bsg.org.uk/resource/revised-barretts-oesophagus-with-low-grade-dysplasia.html

In my case the two six month biopsies where a bit of a formality. I started with C8M8 Barrett's with widespread areas LGD. The reasoning behind the six month window is mainly to do with diagnosis of LGD around the OGJ (Oesophageal Gastric Junction) where a misdiagnosis of Dysplasia can happen quite often.

One technique my specialist used to help identify potential areas of dysplasia was an acetic wash during the OGD. Not sure if this is a common practice.

Once you have your confirmed diagnosis across the two OGDs the move to RFA is not that bad.

An RFA session lasts a little longer than a normal OGD but you also get much deeper sedation. In my case I have been fully asleep (or sedated to an extent that I think I was fully asleep) throughout the full procedure on all three occasions so far.

Post treatment you have to follow a revised diet for a week or so and will have a range of liquid / dissolvable anti acid medications that are not that pleasant but nothing too bad.

There are potential side effects and complications that your specialist would talk you through. In my case the first two sessions were pretty straightforward but the third caused a small stricture which I had to have treated.

The number of treatments you will need will depend, mostly, on the length of your Barrett's segment. As I started with a long / very long segment I will probably need five or six in total, one every three months or so.

The big upside of RFA is that it not only had a very high chance of getting rid of the LGD it is also highly likely to remove the Barrett's segment! My C8M8 diagnosis was down to C2M4 after my second treatment.

Post ablation you still have to look at the underlying cause of the Barrett's. It doesn't stop the reflux that most likely causes BO.

Best of luck. Make sure you fully understand what your specialist is saying. Take notes and follow up on any questions you have. Do some research online and don't be afraid to challenge!

I went through the whole panicked "this just seems to be getting worse and worse" phase but in the end remembered that I was one of the lucky ones. My Barrett's was detected, my dysplasia was detected, I am being treated. Many, many others who do not seek help for chronic reflux aren't anywhere near that lucky with sometimes tragic consequences.

Chin up, be brave and be positive.

G
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chrisrob
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Quote chrisrob Replybullet Posted: 26 Mar 2018 at 10:37am
Thanks for your story and support, Graham.

We have other members who have had RFA featured on one of our pop-up banners:

You may read their stories here:

Bill's Story
Andrew's Story
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Molly6460
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Quote Molly6460 Replybullet Posted: 27 Mar 2018 at 12:50pm
Thanks for your reply my first endoscope said I had a lot of inflammation they took biopsies and I then had a letter to say they were benign I then had to have another endoscopy which was 10weeks later and this one said moderate Dysplasia however I only see lgd or hgd on here so what does moderate mean I have to go again in a months time the more I read the more confused and worried I get. Is there any chance of the cells returning to normal once the inflammation has died down or is that not possible once the cells have changed
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chrisrob
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Quote chrisrob Replybullet Posted: 27 Mar 2018 at 6:05pm
No idea what your endoscopist/gastroenterologist means by moderate dysplasia. The only recognised callsifications are: no dysplasia (the vast majority of us), indefinite for dysplasia (which a further scope will usually clarify, low grade dysplasia and high grade dysplasia. (Following that are neoplasia and adenocarcinoma (cancer) at various grades.
See this image from Johns Hopkins University:

"Normal" Barrett's is metaplasia - a change in cell type.
Dysplasia is a mutation of those cells.
See
this chapter in Down With Acid

It may be possible for dysplastic cells to revert but the Barrett's will always remain.
If there is evidently dysplasia to any degree, it needs confirmation by a follow up scope and the agreement of 3 histopathologists (since it can be easily misdiagnosed).

If dysplasia is confirmed at any grade, it may be

ablated to remove all traces of Barrett's and prevent progression to cancer.
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Denise
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Quote Denise Replybullet Posted: 18 Apr 2018 at 1:41pm
Unfortunately I was recently diagnosed with high grade dysplasia (4cms) with two cancerous polyps. I have had these removed and partial ablation therapy. As I do not tolerate endoscopies very well, I was given a general anaesthetic. As I have a small "airway" I have an considerable pain since the procedures. Has anyone also had this type of painful throat and how long does it last. I am due for further ablation therapy in 2-3 months and am very anxious that it will be even more painful.

I am pleased and grateful that I am receiving treatment to "cure" my dysplasia but not sure if the general anaesthetic is helping. I've had Midazolam 3.5mg previously but "became aware" during the procedure and it was stopped.

Sorry to gone on so much.
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chrisrob
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Quote chrisrob Replybullet Posted: 18 Apr 2018 at 2:08pm
Sorry to hear of your pain but glad it was discovered at this operable stage.
It does seem people react to ablation in various ways. Some, like you, find it very painful whilst other have found it "a piece of cake"(That's according to Graham's Story amongst our "Patients' Experiences".

The pain will reduce and, hopefully, your follow up treatments won't be as painful. But it's better than the alternative.

All the best
Chris
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