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Newly diagnosed

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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=507
Printed Date: 20 Oct 2019 at 11:50pm


Topic: Newly diagnosed
Posted By: Jojo
Subject: Newly diagnosed
Date Posted: 31 Oct 2010 at 10:21pm
Hi i am new to this forum. just been diagnosed with high grade. Dont really know a lot about Barretts Oesophagus, Although i have been having regular Endoscopes for the past 6-7yrs. My last scope was on Thurs 28th Oct. That was when the consultant told me it was high grade. I was sent for blood tests and arrangements are being made for a C.T. scan. I have been  looking on the internet for info but wish i hadnt because now  i feel so frightened. Iam 62yrs old With 2daughters 1 son 7 Grandchildren. Not told any of them ( i cant ) they lost their dad to cancer 12yrs ago. Do i tell them now or wait till aft
er my scan. Feel devastated cant cope.
 
        Dont know if i have put this on the right topic ? 



Replies:
Posted By: chrisrob
Date Posted: 31 Oct 2010 at 11:30pm
Hi Jojo,

So sorry to hear your news but glad you've found us.
I don't know how much you've been told about Barrett's or found out on line.

Your consultant has diagnosed High Grade Dysplasia which could be pre cancerous so he'll want to make sure it doesn't progress.
Having had frequent regular scopes previously, he'll have a good idea of its progression and best possible treatments.
Hopefully, you'll be offered ablation therapy - perhaps HALO - to destroy the Barrett's cells so cancer cannot develop.

I cannot advise you as to what to say, nor when, to your children. They would probably want to know but you must be strong enough and sure enough to know, and let them know, that this has been discovered at a point when cancer can be averted and they will not lose you in the same way they lost their father.

Please ask if you have any questions. Although we are not doctors, there are a lot of very supportive people on here who will give the benefit of their experiences.

We do wish you all the very best

Chris


Posted By: sammie
Date Posted: 31 Oct 2010 at 11:37pm
Hi Jojo.  I'm relatively new to my barrett's diagnosis, and to this site, but from what I've seen so far, this site is a great resource for support and information.  I am by no means an expert, but I would say first, don't panic (I know, easier said than done).  It is scary, but at least they've detected it, they're arranging for further tests, and you can try to do some research into treatments like halo ablation and EMR (endoscopic mucosal resection).  I would also suggest you seek a second opinion as well. 
I wish I could give you an answer as to when to tell your family, but only you will know when you're ready.  You may need to tell someone so you can lean on them for support, or you may want to wait until you have an action plan in place, there is no wrong answer.  In the meantime, I'm keeping you in my thoughts and prayers, and know you have a lot of support from the folks on this forum.
sammie


Posted By: Jojo
Date Posted: 01 Nov 2010 at 12:24am
Thankyou Chrisrob n sammie for your kind words and support. Maybe would be better not to tell my children yet until i have a little more information., but its really hard when i see them cause i just feel cut up inside. Just so glad i found this forum at least i can talk to someone. Will keep you informed thankyou x


Posted By: RichardT
Date Posted: 01 Nov 2010 at 10:08am
Yes - all these technical terms (Dysplasia, Metaplasia, Neoplasia etc) sound very scary. But none of us really know how frightened to be. You can easily scare yourself silly via the www. I looked up wikipedia on those terms.
http://en.wikipedia.org/wiki/Dysplasia
http://en.wikipedia.org/wiki/Metaplasia
http://en.wikipedia.org/wiki/Neoplasia

Part of the problem with the www is that there are so many sites selling cures for various things. Unless they can convince us we are ill - lots of those sites won't sell things, so they can often play on your fears to boost their sales.

Facts are few - and often disguised as jargon!

Personally - I'm not scared: I am finding it an interesting challenge learning about things. I have been diagnosed but I am in good hands - yes, they may make me feel a bit like a lab-rat! But there is a lot of interest in Barrett's - the teams are paying a lot of attention to it. If we are lab rats, we are lucky to be at the leading edge of medicine: 20 years ago choices were much restricted. By being diagnosed, my chances are much improved. It's not scary - it is good news!

I am sure that if anything progresses in myself, they will find it quickly. In the meanwhile, I'm trying to improve my life-style. Difficult at present as my diet is rather restricted by what our children will eat! My wife and I are both very adventurous with food and both would, by choice, eat far more salads, fruit and veg and less meat. Not so the children! We would also walk a lot more - again not so the children. Have a look at the photos of some of the walks we have done:
   http://www.Torrens.org.uk/Cats/Walks/index.html Walks with the cats
   http://www.GreenBottom.org/Walks/index.html Forest of Dean


-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: jcombs99
Date Posted: 01 Nov 2010 at 11:05am
Jojo
   Very sorry to hear you have HGD ,I had that and lived to tell the tale no worse for wear .If you have HGD you have a 50% chance of haveing cancer already then it'a a different matter. You should know that by the doctor and the internet by now..A C-T scan (pet scan better ) is good but a EUS is better which I know they will do in the UK(LIZTHEBOB had one)..TIME is the big thing here you don't want to wait because time isn't on your side .Check out SYNMED.com.uk (like right now)They sell the halo machines to NHS and private doctors who use halo (ABLATE)to removed the HGD not cancer yet..You should have a close person to lean on with this and to help you liston to the doctor.. Because most people turn their brain off when they hear cancer..Maybe keep this under your hat till you find the worse of it no need to upset people. Then figure out your course of ACTION..
   Look at my old posts and LIZTHEBOBS new posts .I'm always around I'm a daytrader .DON"T be afraid to post anything or at any time your among friends . There are a few blogs around but this one is watched..Take your pills and eat right don't gain 20 lbs. like I did .

" Better to Ablate then Wait "

HGD JEFF


Posted By: LazyLout
Date Posted: 01 Nov 2010 at 9:34pm
Hi Jojo,

I am sorry to hear you have HGD but hopefully it has been detected before any cancerous cells have developed. The hospital team looking after you will, I am sure, help you make the right decisions and guide you to a full recovery.

As has already been posted you will find lots of valuable help and support on this forum BUT it will never equal the emotional strength you will be able to draw from family and friends. Hence I believe you should share this news with your loved ones and have at least one of them with you when you next have a session with your consultant. You will need someone there to absorb all the information you might miss due to trauma.

Lazy.



Posted By: Jojo
Date Posted: 02 Nov 2010 at 12:17am
Thankyou everyone for your concern, i will keep you all informed. Still waiting for Biopsy results and CT scan.xxxx


Posted By: lizthebob
Date Posted: 02 Nov 2010 at 6:22pm
Hi Jojo
As you may have seen I have recently been in your position. All I can say is that it is good that your doctors are jumping on this quickly and sorting out scans and stuff.
That is what has happened to me and although I had the worst news, I have now started treatment all within 4 weeks of the diagnosis so I know I am in good hands
Really hope that things work out to be ok for you.
Liz


Posted By: Jojo
Date Posted: 02 Nov 2010 at 9:53pm
Hiya Liz
Sorry to hear that you had bad news. When you say you have started treatment what exactly is the treatment you are having. Hate asking you but have you been diagnosed with Cancer. Suppose you can tell i am completely new to all this  but i just need to know as much as i can so that i am prepared when i go see the doctor  So sorry JOAN xx Hope things turn out well for you too.


Posted By: lizthebob
Date Posted: 03 Nov 2010 at 12:10pm
Yes I am afraid I have been diagnosed with cancer.
I had a high grade biopsy in August and then they did another repeat and found a small nodule which had cancer cells in it.
I then went on to have a PET scan, CT scan and and endoscopic ultrasound which showed no spread anywhere but that although small, the tumour had gone quite deep into my oesophagus. They think it had been there and probably missed before.
I am having two cycles of chemotherapy and then surgery to remove part of the stomach and oesophagus. The chemo is purely to 'mop up' any cancer cells that may be elsewhere as the tumour is operable.
It has all been very scary but I do feel well looked after and am trying to be positive.
Whatever the case, us people with barretts at least know we are kept a close eye on so that things don't get out of hand.
All the best
x


Posted By: jcombs99
Date Posted: 03 Nov 2010 at 12:19pm
Liz
   Hate to borther you BUT what is the exact STAGE (111,UK) of your cancer.. In the US like I said doctors like to confuse people , they have a couple of different charts for this..There's one person who just posted with stage 1 in a us website..

Take care, JEFFREY


Posted By: lizthebob
Date Posted: 03 Nov 2010 at 5:03pm
Hi
Technically here it is staged as T3 LOMO
Which means it has gone into the depth of the muscle wall. But there is no lymph node or metastatic spread.


Posted By: Jojo
Date Posted: 04 Nov 2010 at 9:32pm
Hiya Liz
Just dont know what to say only good luck with your treatment, and i am so wanting everything to be allright for you. I received an appointment today for my CT scan, it is for the 17th Nov. Seems like it is so far away i need it like today. Just want to find out what is going on. Can you tell me why i am having a CT scan is this to see if i have developed Cancer and if it has spread. Feel so confused about it JOAN xx


Posted By: lizthebob
Date Posted: 06 Nov 2010 at 1:58pm
Hi Joan
I think that if you have high grade it is fairly routine to do a CT scan. This will be to just check that there is nothing suspicious going on, like any lumps or enlarged nodes that need checking.  Try not to worry and take one day at a time.
Liz


Posted By: gblyth
Date Posted: 06 Nov 2010 at 9:59pm
Hi There

More and more centres are starting to offer HALO RFA for HGD. Please click on the link below to see all hospitals as of September 2010. Presently 20 but expect to have 30 plus by this time next year.

http://www.barretts-oesophagus.co.uk/find_doctor.htm - http://www.barretts-oesophagus.co.uk/find_doctor.htm

-------------
I would like to declare that I am a director of SynMed Limited the company that distributes the Halo Treatment from Barrx Medical in the UK.

Geoffrey Blyth






Posted By: jcombs99
Date Posted: 06 Nov 2010 at 10:24pm
JoJo and HGD people

    Click on that link and IF you like what you see CALL your doctor on Monday and see IF you can get that treatment like Right now .Halo willn't mess up your treatment OR TESTS IF you have anything worse .When I was first treated by my Doctor , he was thinkin I had just barrettes but I had HGD so at the next halo he just turned up the machine...

Worked for Me

HALO, HGD , JEFF



Posted By: Jojo
Date Posted: 06 Nov 2010 at 11:08pm
Thankyou again Liz.. The hospital that is treating me is on the list for the HALO so hopefully  when i go to see my doctor if need be i will be offered this treatment. JOAN xx


Posted By: Gigi
Date Posted: 14 Nov 2010 at 8:14pm
Hi JOJO
Sorry to hear that you have had such a fright and difficulty sharing the load with your family. I hope your scan goes well this week.  Wishing you well
Love gillx


Posted By: Jojo
Date Posted: 15 Nov 2010 at 6:53pm
Thanks Gill
go Wed for CT scan then to consultant at hospital for results on the 1st Dec.  Will keep you informed Joan xx 


Posted By: Jojo
Date Posted: 18 Nov 2010 at 10:36pm
Went today for CT scan. Injected with a dye suppose so that they can see things more clearly. Back for my results on 1st Dec . The waiting seems to be the hardest.


Posted By: jcombs99
Date Posted: 18 Nov 2010 at 10:44pm
JoJo
   Keep your head up high , take your pills and watch your diet . So when they scope you again they can see clearly ..

Take Care , HGD Jeffrey


Posted By: lizthebob
Date Posted: 19 Nov 2010 at 4:15pm
glad you have had the scan done now. Thinking of you as I know the waiting is the hardest part. Try to forget about it as much as you can.
Take care.
Liz
 


Posted By: Terrapin54
Date Posted: 21 Nov 2010 at 2:52pm
Hi JoJo,
I've recently been diagnosed too (last week), and don't know yet how serious it is.  I've had a CT and MRI scan, but don't know the outcome of either yet. I'm going to see the consultant again on 7th Dec. and agree that the waiting is hard. As lots of people have mentioned, at least its been diagnosed and treatment can be given. Good luck with your own results. I'll post mine when I get them.
Richard


Posted By: jcombs99
Date Posted: 21 Nov 2010 at 6:00pm
Rich
   When you go in on Dec. 7th make sure you take someone WITH you to liston to the doctor . MAKE sure you get a copy of the doctors report and ALL tests reports BEFORE you leave(they forget to tell you some things)..Then google every word you don't understand..As everyone on this website knows the NHS only spends money when it HAS to.

Been there too

HGD JEFF


Posted By: Jojo
Date Posted: 04 Dec 2010 at 11:24pm
Oh well went for results Mon1st Dec. Not good news, have found Cancer cell. Had me back on Tues 2nd Dec for another scope , This one was with a scan on it. Got a phone call from the hospital on Fri 3rd Dec arrangements have been made for a PET scan on Tues 7th Dec.  Everything seems to be moving so quick now  Doctor explained the options available to me and he seems quite optimistic that it has been caught in the early stages.Have to wait for PET scan results and all being well he said he is going to try to cut the cell away then hopefully HALO next  I have every confidence in my doctor and suppose i am very lucky to have one of the best in the country. This i have been told. Just hoping PET scan goes well 
 
Thinking of you all especially you Liz xx


Posted By: jcombs99
Date Posted: 05 Dec 2010 at 6:05pm
Jojo
Very sorry to hear you have cancer but at least they found it and are moveing fast on this. Sounds like a stage 0 to me , are they going to do an EMR on you to remove it or something elsa?I waited for 2 years for cancer to pop up because they couldn't rule it out in my case . Then I just forgot about it and called myself cured. Keep us posted with the details and tests you are takeing , that will help all a lot .I think you will be the second person to have halo on this blog . I think I'm the first .

Take Care of yourself and try to keep busy

HGD JEFF


Posted By: Jojo
Date Posted: 05 Dec 2010 at 7:40pm
Yes they are doing an EMR, Depending on results from PET scan. I certainly will keep you posted Jeff. Still getting used to all the jargon eg EUS  EMR CT PET scans its all mind boggling JOAN x


Posted By: Gigi
Date Posted: 06 Dec 2010 at 10:06am
Hi Joan. Sorry the news wasn't great. Hope they look after you really well. Good luck with your treatments.
Very best wishes,
Gill


Posted By: Terrapin54
Date Posted: 10 Dec 2010 at 7:31pm
Saw the consultant today. Biopsy shows metaplasia so only need to go back for a scope in two years time. Started on Omeprizole two weeks ago. Some side effects at first, dizzy, light headed, but these seem to have passed. Has helped with relux though. Still got other GI problems which scans haven't id yet, so got to go back in January. More blood tests today.
 
I'll certainly continue with forum as things develop. Thanks to all.
RichardSmile


Posted By: jcombs99
Date Posted: 11 Dec 2010 at 7:56pm
T54
    That's great you only had barretts nothing worse. But what reason did they give why they gave you a pet scan and a MRI. I had them but I had HGD.

HGD JEFF


Posted By: Terrapin54
Date Posted: 12 Dec 2010 at 3:14pm
Hi Jeff,
I'd lost a lot of weight over a few months. I've never been overweight, at 5'8", I normally weigh 72 kilos (11st 5lbs or 159lbs). In August this had dropped to 59 kilos (9st 4lbs or 130lbs) and they thought I was something some kind of IBD such as Crohn's. The colonoscopy found no evidence of this and apart from slight inflammation, the biopsies were also inconclusive. So I was referred to a second specialist who sent me for CT and MRI scans of my intestines and abdominal/pelvic areas. I also had endoscopy, all within a 3 week period. The endoscopy discovered the Barrett's which wasn't really expected.
 
The bad news is that both MRI and CT were inconclusive apart from showing some old scar tissue, which shows there was a problem. The good news is that I have put on 2 kilos (5lbs) in the last 6 weeks. Like I say, I've got to go back in January to check my weight. They are still talking about Crohn's bizarrely enough although no obvious evidence.
 
Sorry for long winded reply, but I think the Barrett's probably explains some of my recent health problems. 
RichardSmile


Posted By: jcombs99
Date Posted: 12 Dec 2010 at 3:38pm
T54
Anyone can be long winded with me THAT"S how you learn..My buddy who had a bad back for 20 years lost 40lbs.(FAT) on his own , so the doctors did a Ct-scan on him EVEN though he TOLD them he did it . It turned out FINE. He had the lower vertabrae fussed on Tuesday and is up and walking now.I had a ct-scan and a EUS and they told me " we aren't sure " or WE don't know is the REAL thing...

Take Care Jeff


Posted By: RichardT
Date Posted: 12 Dec 2010 at 3:50pm
> Sorry for long winded reply, but I think the Barrett's probably explains
> some of my recent health problems.

My own feeling is that some of your health problems caused the BArrett's.

Barrett's is a reaction to acid (or bile) in the oesophagus. It is not a health problem in its own right



-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: Jojo
Date Posted: 15 Dec 2010 at 2:02pm
Went  for PET scan on the 8th Dec. Got the results on 14th Dec. Cancer confined to oesophagus area of Barretts. Not spread anywhere else. What good news. EMR to be done on the 23rd Dec. Then if all goes well start HALO treatment  Jan.
Take care all xx
 
Hope your treatment is going well LIZ Thinking of you xxxxxxx


Posted By: jcombs99
Date Posted: 15 Dec 2010 at 2:21pm
JoJo

GREAT news that's the second GREAT news in the last few days (must be christmas)..Lay in a huge stock of liquid protein drinks..

GGGGGGGGGGGGGGGGreat!!!!!!!!!!!!!!!!!

Best of Luck

HGD JEFFREY


Posted By: chrisrob
Date Posted: 17 Dec 2010 at 11:56am
Good News, JoJo,

All the best for your EMR next week. Not exactly the choice of Christmas present but it will be a relief to know cancer hasn't spread.

Trust all goes well; we're all thinking of you.

Chris


Posted By: Jojo
Date Posted: 10 Jan 2011 at 10:47pm
Had EMR on 23rd Dec.  Phone call from hospital on 8th Jan all went well with EMR and will be starting HALO treatment on the 22nd Feb. Now for the bad news i fell and broke my L wrist so now i am in plaster for 6wks. Oh well roll on summer could be all over then, need some luck. HAPPY NEW YEAR TO YOU ALL. XXXXX  JOAN


Posted By: jcombs99
Date Posted: 10 Jan 2011 at 10:57pm
JOJO
   Sorry about the wrist but thats nothing to whats going on .1)I don't know anyone who had a EMR how do they know they got it all (petscan)??? 2) Did they tell you how many halos?? I had 4 halos ,8cm barrettes ablated.. Glad it went well BE CAREFUL and heal so they can burn the barettes away.

Take care JEFF


Posted By: Jojo
Date Posted: 10 Jan 2011 at 11:33pm

Dont know if they got it all. Just assuming they did. When they rang me, i asked if the EMR was a success and they said yes. Didnt tell me how many HALOs but somewhere along the line i think they said 3 or 4. I will ask more questions when they next ring me. Suppose i just feel lucky so far that i have been offered HALO. JOAN xx



Posted By: Jojo
Date Posted: 10 Jan 2011 at 11:37pm
Jeff was you really sore after your treatment(  HALO ) how long after could you eat n drink. How long between each treatment. JOAN xx


Posted By: jcombs99
Date Posted: 10 Jan 2011 at 11:38pm
JOJO
    Also ask IF you can pick the halo doctor you need a 100 jobs done at least . NO newbees on this job .My doctor had 300 then now over 3000........Make your own luck.
Don't worry about the HALO load up on the lquid drinks and just do it SAFER then what he says . You may not get a second shot at this barrettes SO do it right the first time.

HGD JEFF


Posted By: Jojo
Date Posted: 10 Jan 2011 at 11:43pm
Yes Jeff  my doctor is one of the best in my area, have double checked on this. JOAN


Posted By: bluetobits
Date Posted: 11 Jan 2011 at 2:11pm
Newly diagnosed today - gutted (no pun intended)
 
 
Having suffered with a Hyatus Hernia for 25 years and taking anti acid medication throughout this time on a regular basis I thought I would be OK - I was even told that PPI's can heal the oesophogus - not for me.
I had a camera down my throat 8 years ago and everything was OK.
 
Dr who carried out the scope said he would advise a two year repeat of camera/biopsy.
took biopsy today - how does he know already that 2-years is a short enough period?
 
Seemed very positive that Barretts was nothing to worry about and that it was only 1 in a 100 who have Barretts who go on to develop the big C - didn't re-assure me one bit given my track record with Health (Diabetic,Angina,Reduced Kidney function)
 
He's been a Consultant in digestive disorders for 25 years so he must know - maybe!!
 
Wish I had had a sedative before the procedure - it was really really uncomfortable procedure - is it any better with a sedative?
 
I already want this HALO tretament  - terrified at the thought of having the camera down my throat at regular intervals (2 in 8 years allowed me to forget how uncomfortable it was)- would HALO available to me should I be lucky enough not to have progressed to the pre cancer stage?
 
Is it done under sedation? what are the after effects  HELP mailto:I@M - I'M PANICKINGUnhappyUnhappy


Posted By: jcombs99
Date Posted: 11 Jan 2011 at 2:26pm
Blue
   Doctors have no need to worry about barretts because they don't have it and if they did they would halo it .Keep track of jojo case , right now the NHS is only doing HGD and I guess maybe a few LGD for now . In a few years that will change to all barretts so the people don't worry themselfs to death .Read up on this ,see if you can get a scope every year and do what the doctor says . The only way to get halo is private and thats big money .The odds are in your favor but DON"T count on it because I got HGD in 6 months..It's .5% a year turn to cancer not 1% in their lifetime..Its 5.7% turn to dysplasia a year too.By the way I get scoped every 4 months it's not a big deal but CANCER is.

HGD JEFF


Posted By: RichardT
Date Posted: 11 Jan 2011 at 4:04pm
> Having suffered with a Hiatus Hernia for 25 years and taking anti
> acid medication throughout this time on a regular basis I thought I
> would be OK - I was even told that PPI's can heal the oesophagus -
> not for me.I had a camera down my throat 8 years ago and everything
> was OK.

Similar situation to myself: I'm 67 and my HH is probably congenital.


> Dr who carried out the scope said he would advise a two year repeat
> of camera/biopsy.took biopsy today - how does he know already that 2
> years is a short enough period?

Timing between 'scopes is down to the state of your Barrett's. Mine is non-dysplasic - or at least the biopsies a year ago were indeterminate.


> Seemed very positive that Barretts was nothing to worry about

It's a protective adaptation to resist the effects of bile reflux. As such, in itself it is nothing to worry about.

> that it was only 1 in a 100 who have Barretts who go on to develop
> the big C

I suspect if they analysed causes of Barrett's they could make more sense: Barrett's is often caused by obesity and that is a cancer risk. Hiatus hernia is mechanical - it may not be cause by a bad life-style, so may not be a cancer risk.

> Health (Diabetic,Angina,Reduced Kidney function)

Yes, you have problems.

I have bronchiectasis, ABH, BPH (see my www site) and aching hands so not as bad as you. However since the doctors couldn't offer sensible suggestions on the ABH, BPH or hands so I consulted a medical herbalist. The ABH is cured - the herbalist diagnosed a liver problem. Doctor's tests said liver is OK. but taking a short course of Milk Thistle (a medically proven liver restorative), cured it! The herbalist also greatly improved my BPH. Hands are still under study!

So I suggesy you might also benefit from seeing a medical herbalist: unlike normal doctors, they look at you as a whole person and do not treat isolated symptoms individually. There are qualified doctors who have gone the herbal route so can offer both conventional and herbal.

> He's been a Consultant in digestive disorders for 25 years so he must
> know - maybe!!

No comment. Some are good, others not so good.

> Wish I had had a sedative before the procedure - it was really really
> uncomfortable procedure - is it any better with a sedative?

I have now had 6 scopes without sedation. Yes, it's uncomfortable. But I want to know what's going on.

I have a 9cm Barrett's - quite long. So they take lots of biopsies. That takes a long time: I was 'scoped on Monday and it took nearly an hour. Yes, it gets quite nasty as the throat spray starts to wear off in that time. But I would still not go for sedation. A personal view - not a suggestion!


-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: bluetobits
Date Posted: 11 Jan 2011 at 4:08pm
Thanks Jeff
 
You have it done every four months!!!!!
 
If you have HGD are you not having 'halo' done?
 
do you have sedation for the procedure?
 
If so is it better than none?


Posted By: jcombs99
Date Posted: 11 Jan 2011 at 4:13pm
HALO WAS DONE 2.8 YEARS AGO AND BARRETTES GONE. ALWAYS USE GAS , DOCTOR CAN DO BETTER JOB BECAUSE PATIENT IS NOT MOVING AROUND .


Posted By: bluetobits
Date Posted: 11 Jan 2011 at 4:20pm

Thanks Richard

 
You have approached each of my points methodically and I appreciate your input.
 
ABH,BPH?
 
The screen was behind me so I had no idea what was going on until the consultant told me what he was taking a biopsy.
 
When they turned me round the picture was 'frozen with an area (which he referred to as small) immediately around the access to my stomach a maroon colour darker than the normal 'pink' you could see a lighter colour within the maroon area where I assume he had taken the biopsy from
 
would the person doing the scope tell you whats going on once you came round?


Posted By: bluetobits
Date Posted: 11 Jan 2011 at 4:26pm
Jeff
 
good news for you then .
 
will you have to have 'scopes' done for the rest of your life or is there some point where these stop as you have been 'Barretts free' for long enough?
 
Is it possible that the original cause,if still prevalent,attack the 'new skin' in the same way and the Barrets will come back?
 
not sure what you mean by 'gas' is this some form of sedation such that you are not aware of the procedure?


Posted By: jcombs99
Date Posted: 11 Jan 2011 at 4:32pm
B
There's lots of tests you can take to find out whats WRONG. Sedition (gas ect)there are MANY kinds , find one that works for you . Because if the doctor has to pull out early you will need it done again .The NHS may not want to spend the money.I'm on 4 months up from 3 months maybe soon 5 months and maybe lower the dose of Precvid..

RESEARCH


Posted By: chrisrob
Date Posted: 11 Jan 2011 at 4:54pm
Hello Blue and welcome to the forum,

Two yearly endoscopy is standard practice if you don't have dysplasia. Normally it takes some time for dysplasia to form so more frequent screening isn't usual because every time they stuff an endoscope down your throat there is a risk of damaging the oesophagus.

PPI's do stop the acid but they don't cure the Barrett's. It is possible for Barrett's to slowly heal itself in a rare number of cases once acid is removed from the equation.

As the NICE guidelines presently stand, HALO is permitted for cases of High Grade Dysplasia and, if the doctor makes a good case for it, for Low Grade Dysplasia/ Presently it is not recommended for non dysplastic barrett's because of the possible risks to the oesophagus (and, I guess, they have to consider the financial costs?).
But I'm with Jeff on this one that in years to come it will routinely be offered to everyone with Barrett's. (Though at present there aren't enough machines to go round. Southampton leases one but when they get their own they'll be able to offer the procedure to considerably more.)

As far as having sedation for your endoscopy.
I once had sedation that worked. It was wonderful. One minute I was being asked to swallow the tube and the next thing I remember was coming to with it all done. However, no recent sedation has had any effect as far as I'm concerned - even when they doubled it because I said it had had no effect. But I di see other patients returning from their scopes seemingly sleeping peacefully.
I guess try it next time and see?

All the best

Chris


Posted By: bluetobits
Date Posted: 11 Jan 2011 at 5:39pm
Chris
 
Thanks for that.I just have to hope that the HALO procedure is standard before I develope the dysplasia (if I haven't already got it.)
 
I had my frst upper tract investigation (endoscopy) in 1989 which identified a HH which I now know as being the route cause of the Barretts despite taking ant-acids throughout the 22 years. I was sat vertically upwards in a chair and just given the throat spray - i remember the tube being passed down my throat as being unpleasent but I got through it.
 
I had my second one in 2002 (as my ant acid medication ranatadine(zantac) had stopped being effective and I was coughing up what appeared to be bile (usually the colour of the last thing I ate before going to bed) first thing in the morning) when I was able to go 'private' and as you say ask to swallow and knew no more about it.
 
This time I was lay on my side,no sedation, and it was really unpleasent,I think they pumped too much air down such that I was trying to belch,breath and retch all at the same time - they had a look all the way down to my duodenum which I presume they will not do in future ones as Barretts is what they are looking at, but I survived it.
The guy in the bed next to me asked for sedation but said the sedation didn't work!!!!!!
 
He did have what appaered to be Oxygen tube inserted in his nose prior to the procedure - maybe he had an underlying condition that prevented them from giving him a high dosage.
 
must be a NHS money saving scheme.
 
Would love to know what worked for me when I went private so I could ask for it every time. If I could have that I would have an enoscopy every day.


Posted By: jcombs99
Date Posted: 11 Jan 2011 at 6:30pm
B
There you go call your private (you paid) doctor up and get the doctors report and find out what drug it was . But it doesn't mean NHS will pay for it or use it .Fun isn't it....

JEFF .


Posted By: RichardT
Date Posted: 11 Jan 2011 at 6:53pm
> The screen was behind me so I had no idea what was going on until the
> consultant told me what he was taking a biopsy.

Some hospitals do have dual screens. Addenbrookes (where I am seen) do not. It's a nuisance: being able to see what was happening would help distract one from the discomfort!

I keep intending to get a suitable hand-mirror!

> When they turned me round the picture was 'frozen with an area (which
> he referred to as small) immediately around the access to my stomach a
> maroon colour darker than the normal 'pink' you could see a lighter
> colour within the maroon area where I assume he had taken the biopsy
> from

Barrett's is quite dark: do a google image search for Barrett's.

My Barrett's is quite dark and with a very pronounced dividing line where it stops.

There are often islands of normal squamous cells in the area affected. A biopsy site is likely to bleed a little.


> would the person doing the scope tell you what's going on once you came
> round?

Yes- if you ask. They can also show you the pics they have taken. This information is covered by the Freedom of Information act- so if they are reluctant - you can legally insist.

Much of the important information only is known as a result of the work on the biopsies: a report is then forwarded to your own doctor, and you can see that as well.

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: Jojo
Date Posted: 11 Jan 2011 at 10:27pm
Hiya Blue  My doctor has allways given me sedation. He inserts a venflon into my arm and gives it to me IV (intravenous ) He also sprays my throat. Also administers 02 oxygen throughout the procedure via a tube up my nose. Only once have i woke up and that was only for seconds. I am being treated on the NHS. Ask to be sedated.   JOAN xx


Posted By: bluetobits
Date Posted: 12 Jan 2011 at 8:16am
A little puzzeled why he stated he would be recommending to my consultant two yearly scopes when he wouldn't have the results of the biopsy at this stage?
 
I suppose he was just trying to re-assure me,after all I probably won't see him again as it will probably be someone else next time.


Posted By: bluetobits
Date Posted: 12 Jan 2011 at 8:20am
Is it me but is the main site frighteningly pessimistic - 'In America they call Barrets Cancer!!!!!!!
 
So as we look to America as the cutting edge of medicine - I have Cancer then!!!!!!


Posted By: bluetobits
Date Posted: 12 Jan 2011 at 8:28am
JEFF
 
Good point - my heads still spinning from discovering yesterday that I have Barretts
all sorts going through my mind - didn't sleep last night.
 
I will make an effort to discover this.
 
I note that you are USA based - is there a similar forum for residents of the USA. I presume the 'HALO'procedure has been running for a longer period of time over there - any test study results you are aware of?
 
You always seem to be at the cutting edge of medical advancement (HALO as an example)
 
Blue


Posted By: bluetobits
Date Posted: 12 Jan 2011 at 8:35am
JOAN
 
tracked your situation on the forum - it goes without saying that I wish you all the best for the future.
 
I am of a similar age and in a similar postion - no wish to put a 'black cloud' over my family so I will keep things to myself - hope I can do this without cracking - always been a panicker regarding health matters having had numerous health scares throughout my life - I managed to keep them all quiet apart from my hip replacement operation - I think they would have missed me for 9 days LOL
 
Thanks for the response
 
Blue


Posted By: RichardT
Date Posted: 12 Jan 2011 at 8:53am
> Is it me but is the main site frighteningly pessimistic - 'In America
> they call Barrets Cancer!!!!!!!

> So as we look to America as the cutting edge of medicine - I have
> Cancer then!!!!!!

Yes, isn't it easy to scare your self over the internet! And a few people here are not making that better!

I wouldn't bother: opinions, sales talk etc. is common on the www and easy to find. Real facts are much scarcer and far, far harder to find.

Don't forget that most of the easy-to-find www sites are trying to sell you something. Fear is a wonderful way of selling cures.

US health is hardly cutting edge - except in getting money out of patients. That makes it look technologically competent.

German medicine has a lot going for it: they are technologically as competent as any - but their official medicine also includes herbal medicines.

I have at least three problems that conventional medicine has no ideas on. Two have been cured by by own research and looking at all sources of information. Western medicine only tries to fix problems: it does nothing about preventative medicine. Prevention is better than cure, but much more difficult - who can predict what you are about to suffer from?

I have seen no proven statistics on Barrett's progression, but I would place money on my opinion that the likelihood of progression is not related to Barrett's but to general lifestyle. I would not personally believe generalised figures, only figures that divided Barrett's into groups according to why they developed Barrett's initially.

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: chrisrob
Date Posted: 12 Jan 2011 at 11:01am
Hello again, Blue,

There is a lot of scaremongering.
I guess most people who haven't heard of Barrett's will Google it and almost immediately see the word "Cancer" crop up and panic.

BUT the vast majority of people with Barrett's do NOT develop cancer.
I have heard of HGD Barrett's described as T0 cancer (where T1 is usually regarded as the "lowest" form of cancer).

If HGD is discovered, there are many surgical interventions (including HALO) which can stop it becoming cancerous.
We're talking adenocarcinoma which is usually slow to develop which is why scopes don't have to be done too frequently - unless the Barrett's cells have mutated to LGD. Whereas Barrett's isn't always easy to see via endoscopy (requiring positive identification via biopsy) because it can be confused with other conditions (for example, in my first endoscopies, it wasn't clear where my hiatus hernia finished and my Barrett's began), dysplastic cells have a different structure that is more easily identified.

Your consultant would have told you you'd be scoped every two years as that's normal and he had no reason to suspect dysplasia. If, however, the biopsy did show dysplasia, he would, of course, change the management procedures.

BUT as we always point out on here, we are the lucky ones who know we have Barrett's as we will be monitored to ensure it does not become cancerous. It's those who do not know they have the condition and thus will not be regularly scoped who won't know their cells have mutated until it's too late.

All the best

Chris


Posted By: bluetobits
Date Posted: 12 Jan 2011 at 11:40am

Chris

 
Thanks for the balanced view - I am still in 'panic' mode and much appreciate your response.
 
Blue


Posted By: jcombs99
Date Posted: 12 Jan 2011 at 11:41am
B
They don't call barretts cancer in USA and NEVER did . Get your information from like Mayo or a hospital website.Once again do some homework ,Barrx.com,curebarrettes.com,symmed.com,crymed.com...Only a biopises can tell if and what stage of barretts you have .

Get some sleep
HGD JEFF


Posted By: RichardT
Date Posted: 12 Jan 2011 at 11:46am
> There is a lot of scaremongering.

Indeed there is.

I concur with ChrisRob: Barrett's is nothing to get scared about! It's a physiological response to acid being in the wrong place.

If Barrett's did not occur under these adverse conditions, we'd probably all be suffering from ulcers. Having suffered from oesophageal ulcers myself, I can asure you all - that is a lot more unpleasant!

We all need to stop worrying about Barrett's and what it might become and concentrate on changing our life styles to rectify whatever caused the Barrett's and to minimise our symptoms.

If we do that, there is no reason why the Barrett's should progress. More likely it will gradually fade.


-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: bluetobits
Date Posted: 12 Jan 2011 at 12:18pm
JEFF
 
The statement regarding the US calling Barretts Cancer is on the first page of the barretts campaign site under the three pictures - certainlt scared me!!!!!
 
as does the statistics at the end of the 'treatment' section:-
 
375,000 have it in the UK
37,500 will get Cancer of which
30,000 will die within five years !!!!!!!
 
So thats 1 in 10 WILL get it not the 1 in 100 my consultant suggested
 
I am hoping the 7500 who survive are the ones who have been under survielance and the 30,000 didn't know they had it until it was too late - but no reassurance on this is evident - Is this site trying to scare me to death!!!!!!!! - it's well on the way LOL


Posted By: chrisrob
Date Posted: 12 Jan 2011 at 12:43pm
Hi Blue and others,

I hadn't noticed the wording on the home page.
I think it needs to be changed. I'll mention it next time I meet up with BOC chairman.
I think the intention was to point out the difference in spelling, and perhaps, terminology.

Barrett's is a possible pre-cursor to Oesophageal Adenocarcinoma (which in US is called esophageal Cancer).

The figures are probably largely from studies of the Barrett's registry (http://www.barrettscampaign.org.uk/registry.html) (UKBOR) holding thousands of records.

The statistics are potentially alarming. Just under 1% of Barrett's sufferers develop cancer a year, with a 10% overall chance - if they're not under surveillance.

Normally surveillance at regular intervals (and 2 years is considered sufficient considering the normal slow rate of development of adenocarcinoma) will detect dysplastic changes so treatment can be given before it becomes cancerous.

I think the statistics tell us we need to do more to make the public aware of the condition and the need to have it checked out if they get heartburn frequently - particularly as incidence of Oesophageal cancer are increasing rapidly in the western world - possibly in large part due to diet but it's not as simplistic as that as there are so many possible other factors. There is evidence of a genetic link for example.

But people do have to be made aware of this and take it seriously. Although occasional heartburn is normal, frequent reflux problems do need to be taken seriously.

There are too many advertisements telling us to use various medicines to fight heartburn - I'm sure the drugs companies are making a fortune from them - but they don't emphasise the need to see your doctor if symptoms persist.

Chris


Posted By: jcombs99
Date Posted: 12 Jan 2011 at 1:17pm
Chrisrob AND B
     Good post and get that cancer thing off the front page . I never saw it before . LIKE I said many times just because a doctor says it or you see it in print or your mothers says it . DOESN"T mean it's CORRECT .
The YANKS aren't number one in barretts resarch the EU is and thats the way I was HALOED and it was 50% cheaper (pay attention NHS).If I had cancer 2.5 yrs ago thats where I was going..
     Holy smokes!! I could've gotten the board some free money .I've spent about 200lbs. in the UK , everyone should take a peek at the front page THERES money to be had..

Have a Nice Day
YANK HGD JEFF
B My whole block knows I have barrettes and I got the neighbor proper treatment because he knew me.


Posted By: Terrapin54
Date Posted: 12 Jan 2011 at 1:34pm
Hi Blue and others,
I was diagnosed in November after a scope. It was NHS, and I asked for sedation, which was both IV and throat spray. I was conscious throughout and felt no discomfort. I could also see the screen which was a bit wierd, but distracting in a nice way. Afterwards, I did doze off for a few minutes, but soon came round. Strange thing was although I hadn't eaten for over twelve hours, I didn't feel hungry!
 
When I was told (immediately after the scope), I didn't panic, but did the obvious things of looking stuff up on the web. Fortunately the hospital (Northampton GH), gave me a BOC leaflet, which directed me to this forum. After several hours/days of reading, I was comforted by the comments from Chris, Rob, Jeff and many others.
 
I am now on PPI's, and the reflux occurences have reduced (I didn't even know they were that until Barrett's diagnosed, no heartburn), and I am regaining my appetite, and putting weight back on.
 
As many have said before, at least I know now, and it can be treated and cotrolled. Still experimenting with lifestyle, no obvious conclusions on this really, apart from diet, alcohol, smoking and sleeping position. The forum is also very useful for that as everyone is different.
 
Kind regards
RichardSmile


-------------
Whereof of one cannot speak, one must remain silent.


Posted By: Terrapin54
Date Posted: 12 Jan 2011 at 3:07pm
Originally posted by chrisrob

Hi Blue and others,

The figures are probably largely from studies of the Barrett's registry (http://www.barrettscampaign.org.uk/registry.html) (UKBOR) holding thousands of records.

The statistics are potentially alarming. Just under 1% of Barrett's sufferers develop cancer a year, with a 10% overall chance - if they're not under surveillance.

Chris
Just some thoughts on the statistics.
 
Less than 1% of the population suffers from Barrett's and many of these will be undiagnosed. It is not a well known condition in the medical profession. I had my scope due to other gastro issues, so my Barrett's was found by accident. I'd probably had it for several months at least.
 
Also the forum now has just under 600 members, some of whom are based overseas. When I joined it was in the low 500's. So, in about two months it has grown by nearly 100, and the word is getting out. But it still represents only a small fraction of UK sufferers. Not everyone who is diagnosed will want to join a forum, so the number of diagnosed sufferers is a bit of an unknown.
 
Chris, do you know the actual number on the register?
 
Blue, I would also rethink about telling your family. If you dramatically change your lifestyle, diet, alcohol etc., they will notice and will probably ask questions anyway. I immediately told my family and some friends, and they have all been very supportive and understanding. Mostly they have been relieved that it has been diagnosed and, with my assurance, manageable. My doctor told me that there was only a 1% chance of it developing into anything more serious, and I was happy to tell my family that, and that even then, that could be several years on. I'm happy that they will only conduct a scope every couple of years. It wasn't unpleasant, but I'd rather not have a camera stuck down my throat too often.
 
Best regards
RichardBig%20smile


-------------
Whereof of one cannot speak, one must remain silent.


Posted By: RichardT
Date Posted: 12 Jan 2011 at 4:31pm
> incidence of Oesophageal cancer are increasing rapidly in the western
> world - possibly in large part due to diet but it's not as simplistic
> as that as there are so many possible other factors. There is evidence
> of a genetic link for example.

I think cancer generally is increasing in the western world.

Clearly ones susceptibility to cancer is genetic. But 'susceptible' doesn't mean you will get it, just that environmental triggers are more likely to start it.

There are clearly people with low susceptibility who can drink like fishes, smoke like chimneys and not get any cancer.

Even n highly susceptible people, the cancers are caused by environmental factors such as foods, smoking, alcohol, noxious chemicals.

Some foods are carcinogenic - acting as triggers (but only to susceptible people). Other foods are anti-carcinogenic, negating the effect of the carcinogens.

Problem is finding out which things are good and which bad!

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: chrisrob
Date Posted: 12 Jan 2011 at 4:46pm
Don't put too much store on numbers.

Some of the members may have left and some appear to be rather spurious. But we do seem to be more active than other forums.

But to answer your question: According to the page referenced, "Currently, the UKBOR database contains information on more than 12,000 Barrett’s patients, registered by gastroenterologists from 44 UK centres."
This data may be a little out of date, but it gives a fair indication.

Chris


Posted By: chrisrob
Date Posted: 12 Jan 2011 at 4:53pm
Regards the increase in oesophageal cancer, whereas incidences of other cancers are actually in decline, "cancer of the oesophagus (gullet) [is] now the world’s most rapidly increasing cancer ( and very aggressive with a high mortality) and classified by the Chief Medical officer (CMO) UK as one of the top 5 medical problems currently facing the UK. It is currently cancer No 5 in the UK behind “the big 4”/Prostate, colon, breast and lung, but set to triple within 10-15 years when it will be in the big 4 if not No 1" (I hope Dr Paul Salmon doesn't mind me quoting him.)

Chris


Posted By: bluetobits
Date Posted: 12 Jan 2011 at 5:53pm
JEFF
 
Am I wrong to think the BAARX HALO system is a USA piece of kit?
This is what led me to state you were to the forfront as it appears to be the most successful developement so for for Barretts.
 
You had your HALO treatment in Europe? Where?
Half the cost of the NHS!!!!!
How much did it cost?
 
Blue


Posted By: jcombs99
Date Posted: 12 Jan 2011 at 6:04pm
B
1) They did my halo in the US but the way they do it in the EU for HGD.
2) Half the cost because they didn't do EMR first.
3) big dollars check by you.
4) 2.5 yrs ago they didn't do EMR for CANCER.THEY JUST CUT THE....E....OUT..

JEFF


Posted By: Terrapin54
Date Posted: 12 Jan 2011 at 7:17pm
By my reckoning we have seven new members today alone. Lot of hospital appointments? Anyway, welcome all you Newbies, and please post and add your questions and comments.
RichardTongue


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Whereof of one cannot speak, one must remain silent.


Posted By: Terrapin54
Date Posted: 12 Jan 2011 at 7:20pm
Hi Chris,
if the estimate is 12,000 registered and 350,000 suffering that's a lot of undiagnoesd people.
Regards
RichardConfused


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Whereof of one cannot speak, one must remain silent.


Posted By: Gigi
Date Posted: 12 Jan 2011 at 9:06pm
Hello Blue and all
As my e-mail in-box is pretty full of all the activity on here, thought I would say 'hello'.  As previously said by others, do try not to panic if you can, thou easier said than done.  We've probably all done it - scoured the internet at 100miles an hour taking in all the negatives we can spot, putting together an inaccurate picture - those figures you mentioned were very alarming and when I saw them I thought it was surely 'curtains' for me.  But luckily there are many calming and rational folks on here who can give you lots of good advice and help you to calm down.  As to your first question about the comfort of the endoscopy I had one down the throat without sedation which I HATED, and when I was told my second would be up my nose without sedation  I cried for about two days solid (honestly!!) leading up to the big day. But the nasal approach was so much better for me and was absolutely fine. You can still swallow when the tube goes that way, which sounds bizarre, but it helped alot, as did watching the goings on on the screen. And the good old NHS were very good.
Good luck with your research.
Best wishes,
Gill


Posted By: chrisrob
Date Posted: 12 Jan 2011 at 11:44pm
Richard, we have seen a lot more new members than 7 over the last couple of days - more like 70! BUT they're rather spurious. Admin are alerted and watching. Beware any PMs from these "newbies".

Chris


Posted By: jcombs99
Date Posted: 13 Jan 2011 at 12:12am
LETS REFILL THE TOWER!! I HAVE SEEN IT NO ONE IS THERE.I do have a sharp ax to unfill it once it gets full .A couple of days of me,the fools will be gone hopefully the unsick ones..

JEFF (its been a fun day)

If they wander over to the USA we will give them Halo for free..


Posted By: bluetobits
Date Posted: 13 Jan 2011 at 7:55am
Gigi
 
Thanks for that
 
was your nasal endoscopy without sedation too?
 
Blue


Posted By: Terrapin54
Date Posted: 13 Jan 2011 at 11:03am
Chris,
I think you're right. Looks like another 20 odd have signed up in last 24 hrs. Seems a bit unlikely. Glad the admin are on to it.
Regards
Richard


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Whereof of one cannot speak, one must remain silent.


Posted By: chrisrob
Date Posted: 13 Jan 2011 at 11:22am
Hi Richard,

Yes, it appears we are being sabotaged: 100 new members in 3 days does seem rather unlikely. Not sure what they are intending / hoping to achieve. Admin is on to it, though.

Chris


Posted By: bluetobits
Date Posted: 13 Jan 2011 at 3:14pm
Sorry Guys
 
whats with this sabotage bit?
 
I am a little 'net rusty'
 
I can't believe people are sad enough to damage a site like this!!!!!!


Posted By: chrisrob
Date Posted: 13 Jan 2011 at 3:21pm
Hi Blue,

Not really sure what's going on. In the past we've had people just SPAMming - using the forum to advertise all sorts - but changing the sign up procedure seems to have overcome that. However, in the last week, I think you're the only legitimate new member from over 100 that have registered. As I say, don't know the reason yet - it may become apparent - but it is being investigated.

Chris


Posted By: Gigi
Date Posted: 13 Jan 2011 at 9:57pm
Hi Blue, Yes both were without sedation. However, I can well imagine that a longer time spent undergoing the process would be better tolerated with sedation as about 10/15 mins is quite long enough.  I'm not going to post again for a bit if something sus is going on with the site, so hang on in there.
Best wishes,
Gill


Posted By: michaelh
Date Posted: 18 Jan 2011 at 12:14am
Hi there, new to this and trying to get some answers. My Barrett's is in excess of 13cm long and there is 1 HGD and 1 LGD surgeons are now discussing best method for treatment as it is too long for HALO and there is talk to either watch and do an endoscopy every 3 m onths or partial removal of my oesophagus. Has anyone had this done? as I am only 42. I was born with a malfunctioning sphincter at the bottom of the oesophagus so this has been happening from birth, it was discovered about 6 years ago and I had a fundoplication to stop the acid rising which has worked well, but now this.


Posted By: RichardT
Date Posted: 18 Jan 2011 at 9:10am
> My Barrett's is in excess of 13cm long

That's long indeed!

> and there is 1 HGD and 1 LGD surgeons are now discussing best method
> for treatment as it is too long for HALO and there is talk to either
> watch and do an endoscopy every 3 months or partial removal of my
> oesophagus.

Difficult to know what I would do in your circumstances. Much depends on how many endoscopies you have had, how long it's likely you have had the dysplasias and on whether they are developing.

In my case the endoscopy a year ago was inconclusive for any dysplasia. However - that was my 5th endoscopy, each with lots of biopsies. The more endoscopies and biopsies - the less the likelihood of them finding anything. As long as my oesophagus is now not subject to acid or bile reflux.

None of the surgeons or doctors 'know' the best for you: that would take a crystal ball. They can only go on statistics and experience derived from other cases. At the end of the day, it's an opinion only. Make sure your surgeon tells you exactly why he forms his opinion.

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: bluetobits
Date Posted: 14 Feb 2011 at 11:56am
Its now a month since my 'scope' and diagnosis I have Barretts - nothing from the hospital or my GP to say my biopsies were good or bad news and now I have recieved a cancellation of my follow up appointment from April to June - Is it the NHS's principle to worry people to death such that further treatment (and costs) is avoided?
 
Is this good news or bad who knows
 
Little confused after extensive recearch - it would appear that NICE would prefer you to arrive at the Cancer stage before HALO treatment is administered - a cost thing no doubt and there was me thinking prevention is better that cure.
 
Can't see why the NHS would carry out scopes every 2 years down to 3 months as baretts progresses - @£2k a time they will have spent over £20k BEFORE they carry out halo treatment.
I suppose there hoping you die first- its more cost effective.
 
Also
 
It would appear that the progression to cancer is based on monitoring less than 6% of the countries sufferers(i.e those 12,000 or so on a register - 350,000 sufferers in the UK)  - data that would never be used when approving new drugs so it would appear that the figures used to give you a crumb of comfort are seriously flawed.


Posted By: jcombs99
Date Posted: 14 Feb 2011 at 1:03pm
Blue
     More Funding, Better data not from just 2 people..Look at what other countrys HAVE AREADY DONE..Gee wize another person agrees with me , Halo it before it starts to turn (dyslasia)it's CHEAPER in the long run and a whole lot less WORRY.

Maybe their change their thinking IF we knock on their doors about 1am or maybe just can them like a tuna and be done with it..

Take Care HGD JEFF

Off to my EGD in 1 Hr.with sedition .I'll be talking to the doctor after , then get a phone call in 3 days on how the biopies where.....


Posted By: Terrapin54
Date Posted: 14 Feb 2011 at 2:17pm
Hi Blue,
I think its safe to say that if they have not contacted you in over a month, then they have found nothing more than 1st stage Barrett's. Still, I think its pretty poor that they have not let you know this. Did they not show you the initial results of the endocscopy? Did they tell you how long the section was?
 
Again its poor that they have postponed your follow up. Again, probably not much to worry about, but at least your GP should be talking to you about medication.
 
Agree with comments about funding HALO too, buut in present economic climate, ulikely to get it unless we help to raise funds for it. 12,000 on register maybe, but only 500 or so on forum, and many no longer active. A tough one!
Regards
RichardConfused


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Whereof of one cannot speak, one must remain silent.


Posted By: chrisrob
Date Posted: 14 Feb 2011 at 3:49pm
Hi Blue,

I agree with Richard that no news is good news.
If there had been anything untoward, they'd have contacted you asap.
Southampton now offers a "Virtual Clinic" whereby patients can get their results over the phone obviating the need to travel into the hospital (and the expensive car parking). At my last endoscopy, the endoscopist did tell me the visual results immediately (though, obviously not biopsy results) and discussed with me whether I wanted to make a follow up clinic appointment - which we both felt unnecessary - but said he'd phone if anything nasty showed up in the biopsies.

As regards the NICE guidelines, though. Because of the slow way NICE works and the data they require (gathered long term), they err on the side of caution. Until more long term data on HALO for LGD or non-dysplastic Barrett's are collected, they will not issue a recommendation.

Within their guidelines, downloadable from this site: http://www.barrettscampaign.org.uk/nice-guidelines.html - www.barrettscampaign.org.uk/nice-guidelines.html , NICE state: "The evidence on safety and efficacy of endoscopic radiofrequency (RF) ablation for gastro-oesophageal reflux disease (GORD) is inadequate and there are inconsistencies in the evidence on efficacy (see section 2.5.1). Therefore, this procedure should only be used with special arrangements for clinical governance, consent and audit or research."

and from further guidance:

"Before considering endoscopic therapy as an alternative to surgery, a confirmed diagnosis of high-grade dysplasia or intramucosal cancer in Barrett’s oesophagus should be agreed by a designated specialist multidisciplinary team for oesophago-gastric cancer."

Compare the SAGES (Society of American Gastrointestinal and Endoscopic Surgeons) advice:
"Specific to the management of Barrett’s esophagus, the practice guideline deemed that patients with the most advanced stages of Barrett’s esophagus (high-grade dysplasia and intramucosal cancer) may be treated with endoscopic therapy inclusive of radiofrequency ablation (RFA) and/or endoscopic mucosal resection. Surgery remains an option for these patients as salvage or primary therapy. For Barrett’s patients with earlier stages of disease (non-dysplastic and low-grade dysplasia), the practice guideline states that “RFA has been shown to be safe, clinically effective, and cost-effective in these disease states.”"

The NICE analysis of costing concluded:
"The guideline on Barrett’s oesophagus: ablative therapy for the treatment of Barrett’s oesophagus (NICE clinical guideline 106) is unlikely to result in a significant change in resource use in the NHS nationally."

There are surgeons who are carrying out HALO with LGD and even, possibly, non-dysplasia in this country, as well as in America. Hopefully the amount of long term data is increasing sufficiently to enable NICE to make a more favourable review in future.

This is a bit chicken and egg, however. We need more of these machines available to enable the specialists to conduct the procedures and collect the data. And until those data are available, funding may have to be found from sources other than cash-strapped NHS budgets.

Anyway, Blue, to get back to the point. I guess it's almost certain you have no more to worry about than the rest of us with the metaplasia we may call "normal" Barrett's but for your own peace of mind, I hope you hear soon.

All the best,

Chris


Posted By: jcombs99
Date Posted: 14 Feb 2011 at 5:51pm
Folks
    Just back from a EGD WITH sedition feel a little sick . I hit another home run , the E looks great and he took a BUNCH of biopises which I will hear about on Friday (call). I was worried a little , a lot of STRESS lately (car wouldn't start). Better yet he said I could go down to 30mg (15mgx2) a day from 45mg WHICH was down from 60mg .THERE IS AWAYS HOPE THINGS WILL GET BETTER...I'll never go any lower my HH is 3cm .Less weight, watch the food I eat and fewer Pints .
    Donate that money get a machine ( Maybe Prince Charles could donate a BENZ)..

Maybe a Cheap small Glass Of Port Tonight!!!

Great Day

HGD JEFF


Posted By: LazyLout
Date Posted: 15 Feb 2011 at 2:25pm
Good news Jeff. Hope you didn't have too many glasses of port to celebrate.

Lazy.


Posted By: chrisrob
Date Posted: 15 Feb 2011 at 3:20pm
Yes, great news Jeff,

And you know my view - two wheels are less stressful than four! And it helps keep the weight down!

And a glass of tawny port with some roquefort cheese will suit me nicely, thanks.

Cheers

Chris


Posted By: bluetobits
Date Posted: 16 Feb 2011 at 12:30pm
To one and all - thanks for your input it really does help me.
 
Good news then Jeff
 

In my month of panic I have located,and contacted by e-mail  a Dr Laurence Lovat Consultant Gastroenterologist & Reader in Laser Medicine based in one of Londons top hospitals a centre for Barretts treatment and recieved a comprehensive reply (3-pages)- to my many questions,However, he stuck rigidly to the 'NICE' guidlines and was more in favour of other treatments - presumably because he has pioneered some of them.

 
The one question he failed to answer was -'If you were diagnosed with Barretts would you pay for HALO treatment right away or wait until your a hairs breath away from cancer to get it on the NHS - No reply.
 
If you could aford it would you go for it privately?
3K per treatment (say 2 needed) plus 2k each follow up less than the cost of a family saloon car (you can probably get the follow ups done on the NHS under the guise of gastric problems)
 
It would appear from what I have read on here that HALO can't treat large areas I thought it could do the full length, in stages,over a period of time if necessasry.
Does anyone know why it can't?


Posted By: jcombs99
Date Posted: 16 Feb 2011 at 12:43pm
B
Halo can do the job no matter how large.They Halo 360 all the barrets no matter how long then use the 90 thats why you need a doctor who has done a hundred at least.   I had halo 4x,$2K thats CHEAP..Let one doctor do the WHOLE job (they map it out) then go back to NHS when he oks it .Doctors like money too.

HGD JEFF


Posted By: johnd
Date Posted: 26 Feb 2011 at 10:05pm
Newly diagnosed HH with 5cm non-dysplasic Barretts - could have knocked me over with a feather - never thought I had a reflux problem, just a bit of indigestion, oh well. I'm trying to figure out the options and the outlook - a sea of statistics - don't like this feeling at all! Best wishes to all.


Posted By: RichardT
Date Posted: 27 Feb 2011 at 8:07am
> Newly diagnosed HH with 5cm non-dysplasic Barretts - could have
> knocked me over with a feather - never thought I had a reflux problem,
> just a bit of indigestion, oh well. I'm trying to figure out the
> options and the outlook - a sea of statistics

Interest by the medical profession in Barrett's is quite new. Yes, the incidence pf Barrett's is said to be increasing. But what that means is - more and more cases are being found - because more and more people are being examined for it.

30 years ago I probably had Barrett's. It wasn't looked for, so I was not diagnosed with Barrett's.

Barett's may well have always been common! There is simply no way of knowing!

To my way of thinking, Barrett's is simply an adaptation in the gullet to reflux (call it indigestion, heart-burn or whatever!), same as callouses are an adaptation to hard manual labour.

-------------
www sites and contact:
www.Torrens.org.uk/Med/
www.GreenBottom.org



Posted By: chrisrob
Date Posted: 27 Feb 2011 at 11:52am
Hi John and welcome to the forum.

You are not alone. It is estimated their could be as many as 10% of the population that could develop Barrett's and the majority don't have any idea.
Not everyone feels the acid burning in the same way - so don't have "heartburn" (which is sometimes referred to as "silent reflux").

As Richard points out, the oesophagus is not protected against acid erosion in the same way as the stomach and the duodenum and, when frequently attacked by acid, some mechanism kicks in changing the squamous (normal soft pink) cells of the epithelium to columnar (referring to their shape) replicating those of the intestine (called "intestinal metaplasia"). Norman Barrett took an interest in examining the oesophaguses of cadavers who had died of oesophageal adenocarcinoma and named the cellular changes he discovered in 1950. It is with the development of better endoscopes that the condition has been more readily identified.

Many of us with Barrett's also have / had a hiatus hernia. This pushing up of the stomach through the hiatus in the diaphragm will have weakened the lower oesophageal sphincter making reflux from the stomach back up the gullet more likely. There are many causes of an hiatus hernia: it may be from heavy lifting, obesity, pregnancy (not in your case) or we may have even been born with one.

With the introduction of PPIs (omeprazole, lansoprazole, etc) thirty years ago, doctors had a prescriptive tool to help patients keep acid reflux under control and thus minimise the progression of the disease. The drugs are not ideal (they reduce acid production but do not stop reflux and may provide unwanted side effects) but they may be preventing many from developing cancer.

Those of us who have Barrett's and know it are the lucky ones. We will be regularly monitored for dysplasia (the precursor to cancer) whence surgical intervention will prevent us getting what is now the fifth most common cancer and set to triple in the next 20 years.

I guess, like most of us here, you have been doing extensive trawling of the net for answers - and some sites are more helpful than others.
Whilst we are not doctors, we hope to be able to answer most of your questions from personal experience and our own trawling of the net, so please feel free to ask if there's anything you want to know.

All the best

Chris



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