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A Highly Probable Barrett's

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: General
Forum Discription: A place to just chat & introduce yourself
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=1936
Printed Date: 23 Sep 2019 at 3:18pm


Topic: A Highly Probable Barrett's
Posted By: Inver_TOD
Subject: A Highly Probable Barrett's
Date Posted: 04 May 2018 at 2:37pm
Hi Everyone,
I went for an EMR yesterday, after four Gastroscopies, but the Consultant didn't go through with it for some (as yet unknown) reason.
He did not come to have a chat after the procedure, as most other Consultants have done previously.

However, during his pre-procedure "chat" he did hint at the possibility/probability of Barret's.

My Specialist Nurse told me he had not put any reason on the procedure form as to why he did not proceed, and that I must now wait for the outcome of the MDT (Major Decision Team) consultation next Wednesday -- not what I consider ideal, I must say.

Is anyone aware of any "Barret's (or related) Groups" operating in Scotland please?
I am in the Inverclyde area.







Replies:
Posted By: steveb8189
Date Posted: 05 May 2018 at 7:59am
Hi Tod - Are you sure you mean EMR? Endoscopic mucosal resection?


Posted By: Inver_TOD
Date Posted: 05 May 2018 at 10:27am
Hi steveb8189, That's what they told me I was going in for but, as I said previously, for some unknown reason they didn't do it.
Why, is that an unusual thing to have done, or something ??


Posted By: steveb8189
Date Posted: 06 May 2018 at 6:36am
Hi Tod
Unfortunately we'll all just be guessing and you really need to speak with your specialist. EMR is usually performed to remove bad tissue from the esophagus and isn't something that would be used to confirm/find Barrett's. What was the outcome of your previous gastroscopies? Why did you have them previously?


Posted By: Inver_TOD
Date Posted: 06 May 2018 at 2:16pm
Hi Steveb8189,
I had three gastroscopies prior to this most recent (failed) procedure, brought about by reporting stomach discomfort, acid reflux and heartburn to my GP.

Following the first I was not provided with any post-procedure report but informed verbally the Doctor "was not happy".
However, the few biopsies she took were reported as "non-cancerous" but it was recommended I return for a second examination.

The second examination diagnosis was -- "Oesophagus - Probably malignant tumour, ulcer and ulcer at ogj. Stomach - Gastritis. Duodenum - Duodenitis. - Posterior lower oesophagus - Ulceration - one ulcer of 13mm and tumour, probably adenocarcinoma beginning 40cm from incisors, length 2cm.
Antrum - Gastritis - mild erythematous/exudative with no bleeding.
Anterior bulb - Duodenitis - mild associated with patchy erythema.
PPI medication recommended.

The biopsies taken at this stage came back as non-cancerous.

The third procedure returned --
Lower oesophagus - Hiatus hernia: sliding of length 2cm.
Cardia - Specimens : 10 x biopsy.
Oesophagus - Hiatus hernia and ulcer.
Stomach - normal Duodenum - Normal.
Lesion at OGJ significantly decreased in size.""""

*** This has never been adequately answered as the report on the second gastroscopy stated the ulceration as 2cm too -- so how can that be considered a "significant reduction" if it is still at 2cm??

The biopsy report from this procedure too returned as "non-cancerous" at which time I was informed of the need to undergo an EMR as "they were concerned".

It was during the "chat" prior to the procedure that I heard the term "Barrett's" used.

However, as no EMR was done, and as the Consultant gave no reason for the change of mind, I am none the wiser now -- just more concerned !!

In theory, I should receive a response from my Liaison Nurse on Wednesday afternoon/Thursday morning following the MDT meeting.



Posted By: chrisrob
Date Posted: 08 May 2018 at 9:38am
Hi TOD,

Seems like there's a lot going on in your oesophagus and they're trying to ensure everything is OK.

Hiatus Hernia is the most common reason for reflux as it inhibits the normal action of the lower oesophageal sphincter enabling reflux to occur - https://sites.google.com/site/downwithacid2/home/complications/barrett-s-oesophagus/put-simply - as described here. .

You have also had damage from excess acid production apart from the oesophagus. This had caused inflammation and erosion in the stomach (gastritis) and duodenum (duodenitis) reported following the second endoscoopy. The duodenitis had healed by the third scope, probably thanks t reduction in acid from the PPI medication.

But they were concerned you may have cancer. You had a big ulcer and a 2 cm tumour they suspected of being cancerous.
Although, fortunately, the biopsies did not find cancer, even a benign tumour here is a concern and an https://sites.google.com/site/downwithacid2/home/treatment/procedures#TOC-Endoscopic-Mucosal-Resection - EMR will remove this and provide better material for histology to confirm no cancer is present.

The third scope report s looking a lot more positive than the second. The reduction in size of the 2cm lesion probably refers to the width of the affected area rather than the length.

It is highly likely, though not specifically mentioned in the report, that you do have Barrett's - but until the EMR results come back, they may not be able to confirm its extent and condition. Barrett's may be thought of as armour plating provided by the body to protect the oesophagus against acid erosion. It can develop into cancer at which stage Barrett's cells aren't seen but cancerous ones.

They are obviously taking your case seriously to have a Multi-Disciplinary Team meeting to assess treatment options.



To address your previous enquiry regarding support groups.
Presently there are no Barrett's specific support groups in Scotland - though there are many who would like one.
Unfortunately, all the Barrett's patient support groups are presently across the South of England. (See the coverage on the http://www.barretts.org.uk - Barrett's UK website.)

There was a previous attempt to have a patient support group in Glasgow but I have not heard anything for a few years.

For anyone considering planning a new support group, we have described the process we use https://sites.google.com/site/barrettswessex/about-us/starting-a-group - here .

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


Posted By: Inver_TOD
Date Posted: 10 May 2018 at 1:29pm
Hi chrisrob - My thanks for a very informative response.

However -- as I stated in my previous post -- the EMR was not carried out on the day.

I had anticipated learning the outcome of biopsies and receiving an explanation for the EMR not having been carried out on Wednesday last.

Unfortunately, the response received from the MDT was to the effect that (a) the biopsy results were not yet to hand and (b) as the Consultant had been "on call" in the interim, he had not attended the MDT meeting, so no reason for the "non-EMR" was possible either.

I have been told it will now be next Wednesday/Thursday (16th/17th) before I get any news.

A continuing worry !!


Posted By: Inver_TOD
Date Posted: 16 May 2018 at 2:10pm
Hi chrisrob,
Just thought I'd give you an update, having now heard back from the MDT.
The reason the EMR was not carried out was due to this Consultant considering the High Grade Dysplasia was too large for such a procedure, despite the previous Consultant saying otherwise.
No precise number of biopsies taken was recorded, only the word "multiple" being used.
However, as in all previous biopsies, no cancerous cells have been discovered.
Although still a "matter for concern", the MDT consider that monitoring the situation in about 3 months time should, for the moment, suffice.
I asked my Liaison Nurse to check through all the notes for any reference having been made about Barrett's, but none were found.
So, it appears, my brief "membership" on this forum is over.
I thank you for all your advice and comments, and hope the "bits" contained in our messaging might have proved helpful to others in a similar position to my own.
Keep up the excellent work --- Reassurance is still the greatest medication.


Posted By: chrisrob
Date Posted: 16 May 2018 at 2:24pm
Hi Tod,
No too sure about what you're saying here.
If you have High Grade Dysplasia, that's the stage Barrett's reaches before it becomes cancerous (if it is going to progress further). That's why they have MDT meeting at that stage to look at best treatments to prevent cancer forming.
The recommended treatment for HGD is now RFA (Radio Frequency Ablation) usually in combination with EMR.
So it sounds like you do have Barrett's and at an advanced state of progression.


All the best. I hope you get the best possible treatment.

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


Posted By: Inver_TOD
Date Posted: 16 May 2018 at 2:49pm
Hi chrisrob,
My thanks for your speedy reply.
From what you say it appears I need to question my Liaison Nurse some more, especially as my last Consultant was deemed the "leading light" in both RFA and EMR procedures.
She (LN) is calling me again tomorrow so I shall enquire then and let you have an update.


Posted By: Inver_TOD
Date Posted: 17 May 2018 at 4:51pm
Hi chrisrob,
Well, I've just had a lengthy discussion with my Liaison Nurse who admits to not having fully read the Consultant's notes prior to and during our conversation yesterday.
The reality of the situation is that ---
(a) The results from my first Gastroscopy produced "doubt" in the Consultant's mind and brought about a referral for a repeat procedure.
(b) The repeat procedure not only confirmed that doubt, but indicated the presence of minute High Grade Dysplasia, with no cancerous growth.
(c) The next procedure showed a general improvement but, as it seemed likely the High Grade Dysplasia was still present, a referral for possible RFA/EMR was made. Again, no cancerous cells were discovered.
(d) Results following the procedure during which it had been envisaged the EMR would be carried out, resulted in no High Grade Dysplasia being found, nor cancerous cells either. The Consultant stated the ailment is Barrett's Oesophagus.
(e) Protein Pump Inhibitor medication is to be continued, together with a ** "trial and error" bland diet regime, and a further Gastroscopy is to be performed in 3 months time.
** This recommendation is for determining the possible cause(s) of a digestive disorder which has been intermittently present since the third Gastroscopy. (Stool samples show no disease present.)
I suppose having had four Gastroscopies, a Colonoscopy and a Sigmoidoscopy within an eight week period won't have helped such matters any!
So, it appears I shall (at least for the moment) live to fight another day.



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