Barrett's Oesophagus
 Barrett's Support Forum :Barrett's Support Forum :Barrett's Oesophagus
Message Icon Event: Newly diagnosed - Event Date: 31 Oct 2010 Post Reply Post New Topic
Page  of 11 Next >>
Author Message
Jojo
Newbie
Newbie


Joined: 31 Oct 2010
Location: United Kingdom
Online Status: Offline
Posts: 24
Quote Jojo Replybullet Calendar Event: Newly diagnosed
    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 ? 


Edited by Jojo - 31 Oct 2010 at 10:49pm
IP IP Logged
chrisrob
Admin Group
Admin Group


Joined: 01 May 2007
Online Status: Offline
Posts: 2580
Quote chrisrob Replybullet 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
IP IP Logged
sammie
Newbie
Newbie


Joined: 28 Sep 2010
Online Status: Offline
Posts: 20
Quote sammie Replybullet 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
IP IP Logged
Jojo
Newbie
Newbie


Joined: 31 Oct 2010
Location: United Kingdom
Online Status: Offline
Posts: 24
Quote Jojo Replybullet 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
IP IP Logged
RichardT
Senior Member
Senior Member


Joined: 08 Oct 2010
Online Status: Offline
Posts: 250
Quote RichardT Replybullet 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

IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23 Mar 2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet 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

Edited by jcombs99 - 01 Nov 2010 at 12:55pm
IP IP Logged
LazyLout
Senior Member
Senior Member


Joined: 22 Jan 2010
Location: United Kingdom
Online Status: Offline
Posts: 108
Quote LazyLout Replybullet 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.

IP IP Logged
Jojo
Newbie
Newbie


Joined: 31 Oct 2010
Location: United Kingdom
Online Status: Offline
Posts: 24
Quote Jojo Replybullet 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
IP IP Logged
lizthebob
Senior Member
Senior Member


Joined: 06 Jun 2007
Location: United Kingdom
Online Status: Offline
Posts: 112
Quote lizthebob Replybullet 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
IP IP Logged
Jojo
Newbie
Newbie


Joined: 31 Oct 2010
Location: United Kingdom
Online Status: Offline
Posts: 24
Quote Jojo Replybullet 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.
IP IP Logged
Page  of 11 Next >>
Post Reply Post New Topic
Printable version Printable version

Forum Jump
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot delete your posts in this forum
You cannot edit your posts in this forum
You cannot create polls in this forum
You cannot vote in polls in this forum