General
 Barrett's Support Forum :Barrett's Support Forum :General
Message Icon Topic: Newbie Post Reply Post New Topic
Page  of 6 Next >>
Author Message
Scrumtasticjojo
Newbie Plus
Newbie Plus


Joined: 09 Dec 2016
Online Status: Offline
Posts: 28
Quote Scrumtasticjojo Replybullet Topic: Newbie
    Posted: 09 Dec 2016 at 6:04pm
Hi Everyone - I was directed here today from someone on FB as I was looking for people who were going through or had been through a similar situation to me and signed up to a Barrett's Awareness page.  So for me trying to get my head around everything has been quite tasking.

 I'm a 43 year old female and mother to two small boys - I thought I lived a healthy lifestyle not hugely overweight, eat well, excercise and don't smoke - I also hardly drink as the pain and the acid became a nusisance so I kinda quit!  Anyway in October after enduring what seem to be the worst year of my life dealing with stomach issues and reflux I was finally sent for my first endoscopy!  I near as well had to beg for it as the meds just weren't helping at all. You have to note that I have been suffering since my 20's from reflux and was just fobbed off with antacids by my doctor- so I tolerated it until it became to unbearable at the beginning of the year.

At the end of the endoscopy I was told I had the condition Barrett's Oesophagus with damage of approx 9cm showing high grade dysplasia, I was also shown a 2cm Hiatus Hernia that I knew nothing about  They proceeded to take 14 biopsies along the length. After coming to terms with a condition and given a leaflet about it to take home I was still dazed and confused.  I had previously no idea at all about BO never mind that it could be caused by reflex and potentially lead to cancer.  I got my results back after 3 weeks confirming they had come back positive that I have oesphagal cancer.

Things have moved rather quickly for me since the diagnosis - I have been referred to a specialist hospital that deals with Barrett's and other forms of gastro related illnesses - I've had another gastroscopy and more biopsies taken to confirm and allow the new consultants to have a thorough investigation of the area.  They have upped my Omaprazole to now 80mg per day to allow the area to heal quicker ready for treatment- and I am due next week to go for my ultrasonic endoscopy - I'm assuming that after this I will be told what my treatment plan will more likely to be.  I have also taken part in the clinical Cytosponge trial - wow they say sponge but its more like a brillo pad!  But my theory is - if I can help others in the furture through medical research - why not!  I'm not affraid to talk about what is going on with me to others as I think it sends such a clear message to those oblivious to it - I was one of those individuals who fobbed off my reflux and got on with life!  I have been amazed at reading so many stories on here of other peoples experiences and what they are currently going through and it does make me realise that its not just happening to people who are in their 60's/70's.

Many thanks in advance for allowing me to share my story with you - I say unfortunately but fortunately it should be that my journey is just beginning and I'm unsure at this stage until after the Ultrasonic what type of treatment I will be faced with and that's my biggest fear what I need to be faced with next I suppose, and understanding more about my ongoing aftercare.


Edited by Scrumtasticjojo - 09 Dec 2016 at 6:11pm
IP IP Logged
chrisrob
Senior Member
Senior Member


Joined: 01 May 2007
Online Status: Offline
Posts: 2538
Quote chrisrob Replybullet Posted: 09 Dec 2016 at 7:07pm
Hi and welcome to the forum.

Well, what a story. I'm guessing they've found the cancer at stage 1 since it wasn't immediately obvious at endoscopy. If so, it should be possible to ablate it. I'm guessing that's what they want to do which is why they're wanting to reduce the inflammation. This can take a couple of weeks. If the cancer was more progressed, they'd want to act quicker.

Your story does highlight the need for reflux to be taken seriously by doctors. They usually just think because it's most prevalent in middle aged white males, they don't need to investigate if you're younger or female.

Not sure which part of UK you're from?
I'm in Southampton which has one of the best units in the country for dealing with Barrett's & oesophageal cancer. - though not running the BEST2 (cytosponge) trial currently.

If you visit the Barrett's Wessex website, you will find some patient stories - including Bill's story whose HGD Barrett's had just turned to cancer when he had it ablated.

Whilst on the site, check out the Journey tab (from diagnosis to treatment) that includes Radio Frequency Ablation treatment (that used to be called "Halo".)

You may also want to click on the tab that takes you to the free encyclopaedia Down With Acid that describes everything about acid, reflux, complications and management.

The good news is your condition has been found early enough to be treated.
We are all wishing you every good wish and hoping for a speedy resolution.
Please do keep us updated.

Chris
IP IP Logged
Scrumtasticjojo
Newbie Plus
Newbie Plus


Joined: 09 Dec 2016
Online Status: Offline
Posts: 28
Quote Scrumtasticjojo Replybullet Posted: 10 Dec 2016 at 8:11am
Hi Chris

Thank you so much for the welcome and for the additional information - there is a wealth of knowledge out there if only people knew where to look for it. 

Yes I'm hoping it sounds all positive they have found visually three areas under the gastroscopy examination that have been determined as cancerous - now just waiting for the ultrasonic. These cancerous areas are in different parts of the 9cm of high dysplasia so interested to hear after the Ultrasonic what treatment will be given one of the areas the consultant informed me needs to be checked if its near a muscle as this will alter treatment type rather than it being just in the mucosa layer.

I am currently based in Cambrisgeshire and having my treatment done in Addenbrooks.  I think the shock for me is a bit like Bill having lived with my condition since my early teens/20's onwards and thinking oh its normal just need to watch the food I ear and take antacids.  When I was pregnant it was horrendous - I did seek medical help at that time but was given different antacids to take- as soon as my children were born - the pain subsided to what I thought was normal or managable - but clearly it wasn't but compared to my pregnancies to was a lot better- I then continued to live with it for as long as possible until earlier this year beginning of March  I had stomach cramping, acid in my throat that needed me to be sick in order for me to get any relief from it - it was pure agony! It took until October to get the endoscopy done when the doctor had run out of options for me!  By which time the acid had been so bad over the years it has damaged my teeth also. I remember a while back a dentist asking me if I ever had been bulimic or annorexic because the acid damge to my teeth was so bad- in hindsight I never even thought to link the two together!

Its only until you find sites like this and read of other peoples stories that there are just so many more young people suffering from this condition and not getting the required medical attention for it until its to late!  Even antacid adverts should recommend seeking a doctors advice if the sufferer is having the same or more symptoms after a few weeks.
 
Jo
IP IP Logged
Pyrrhonist
Senior Member
Senior Member


Joined: 12 Mar 2013
Online Status: Offline
Posts: 223
Quote Pyrrhonist Replybullet Posted: 10 Dec 2016 at 10:32am
A tragic story indeed. I sympathise.

May I ask how long you had been on PPIs (Omeprazole) and what dosage before they upped it to 80mG?

BTW: I also am under Addenbrookes - I'm in Burwell so if eyeball contact would help you (or anyone else near Cambridge), email me. My email address is in my profile - or contact via my www site.
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.
IP IP Logged
chrisrob
Senior Member
Senior Member


Joined: 01 May 2007
Online Status: Offline
Posts: 2538
Quote chrisrob Replybullet Posted: 10 Dec 2016 at 11:00am
Hi Jo.

I'd actually guessed you were in Cambridge when you'd said it was one of the country's leading oesophagus cancer centres and you'd had cytosponge. You'll be in good hands with Rebecca Fitzgerald's team.

I remember some years ago being chided by a dentist incorrectly accusing me of eating too many sweets as there was fresh decay. More recently a more sympathetic dentist told me not to brush for a couple of hours after eating, as the acid softens the enamel and brushing can remove it, but to use a good mouthwash first.

I agree there is a need for health warnings on antacids. The Oesophageal Cancer Westminster Campaign (which was supported by our local MP for Eastleigh, Mike Thornton, who lost his seat in the last election and now chairs Barrett's Oesophagus Campaign and chaired by one of our surgeons, Tim Underwood) was to have raised this in parliament as a private members' bill. Sadly OCWC isn't really active presently but all of us who are part of the Action Against Heartburn consortium agree.

In UK, nearly 8000 lives a year could be saved through awareness raising. If I hadn't passed a kidney stone 25 years ago (from too many Rennie antacids), I'd probably never have realised how important it is not to ignore persistent heartburn.

That's what drives me.
My father suffered acid reflux all his life and died of a heart attack in his 50's - and that was before PPIs.
I developed a kidney stone - and that was before I was on PPIs.
That's why I remain sceptical about the "evidence" PPIs are claimed to cause heart and kidney problems.

For 30 years I was a teacher. I believe in education which is why I am mainly responsible for having February recognised as Oesophagus Awareness month in UK and urge everyone to do what you can to raise awareness that month (and the rest of the year).

This website (PTYO.org.uk) was set up to give ideas about raising awareness.
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23 Mar 2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 10 Dec 2016 at 12:55pm
Scurumtasticjojo
Go the top of the page and click on Memberlist then Find ..STEELEE and click on his posts it will take U like 15 mins to read all of them .I PMed him maybe he will post he is a little further along then U maybe he can give U a few ideas .That's really good ur on a super dose they will be able to see more clearly . That's good ur HH is only 2cm mine is 4cm so maybe when it is over U can just take ppi's like me .This will take a long time to sort out do ur homework so U know all the medical terms .
Good lucky on the EUS next week .

Cheers

HGD Jeff
IP IP Logged
steelee
Groupie
Groupie


Joined: 21 Jan 2016
Location: United Kingdom
Online Status: Offline
Posts: 82
Quote steelee Replybullet Posted: 11 Dec 2016 at 4:01pm
Hi Jo,

Sorry to hear what you are going through as it's not easy.
I have been through pretty much the same but am further down the line, they will do an EUS (ultrasonic endoscopy) to help stage the cancer, hopefully it will be a T1a and they will remove it via EMR (endoscopic mucosal resection) and then RFA to ablate the Barrett’s as they did with me, twice so far!
I know the worst part is waiting but try not to worry too much as it sounds like it is very early stage. All you can do at this point is trust the professionals they are very good and will do what is best for you, not sure about you but I was assigned a Macmillan nurse who has been fantastic in answering questions etc. Sometimes you just want to talk to other people in the same situation which is where we all can help, I still at this point don't feel it's real mainly because I don't feel at all ill. Don't worry about having an EUS as it's not painful and I was eating and drinking normally the day after with no discomfort, oddly I had RFA 3 weeks ago and am only just starting to feel discomfort now but that's more than likely down to me not giving it time to heal as had to be places doing things that didn't allow me the time to take it easy but most people have no pain at all.

If you have any questions or just want to chat please do, there are lots of good people here who will listen and give you advice.
Good luck for next week and go prepared with lots of questions to ask as the more you understand the better you will feel.
Ed
IP IP Logged
Scrumtasticjojo
Newbie Plus
Newbie Plus


Joined: 09 Dec 2016
Online Status: Offline
Posts: 28
Quote Scrumtasticjojo Replybullet Posted: 11 Dec 2016 at 6:16pm
Hi Ed - that's exactly how I feel - I think people must think I'm a fraud as I feel well and fine - they keep saying to me I hope you feel better soon - but the thing is I feel fine and look fine but just have this nasty condition growing inside of me.  I to am hoping its early stages and then it dealt with the same as you or as other here have also mentioned. I was more worried about the pain and discomfort after the RFA procedure - but its comforting to know that you felt fine after it. I'm hoping to have more answer by the end of Tuesday.
IP IP Logged
Scrumtasticjojo
Newbie Plus
Newbie Plus


Joined: 09 Dec 2016
Online Status: Offline
Posts: 28
Quote Scrumtasticjojo Replybullet Posted: 11 Dec 2016 at 6:19pm
Hi Pyrrhonist - I was only put on Omeprazole after my first intial endoscopy in Oct when they diagnosed with me Barretts- I was on 40mg until this week  (wed) when they upped me to 80mg. 
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23 Mar 2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 11 Dec 2016 at 6:45pm
Jo
    Ur case is just like mine only ur ONE year further down the line before finding it.The KEY to both of Urs is ACID Control(PPI's)and hopefully it doesn't Pop Up or has spread OUTSIDE the O wall . Jo they will do a Mini EGD to look at the bad spots then do the EUS .Then take biopsies OR do a EMR right then .I LOVE the EUS(Painless) there are no DVD's to look @ the Doctor told me right then what was going on .The biopsies take a tad bit longer . Be in the proper frame of mind and don't miss any test with the NHS it could be awhile to get another and TIME is everything .Take ur PPI's that morning and bring them with to take after .There's a good chance U will need a C-T Scan or a Pet Scan(Google).

Don't worry about what people think worry about what ur Doctor is doing and is doing it CORRECTLY .

Had 31 EGD's,5 RFA(Halos),EUS,C-T scan , Barium X-Ray,5 PH Tests , Failed Fundo . Jock itch too.

CHEERs

Edited by jcombs99 - 11 Dec 2016 at 6:49pm
IP IP Logged
Page  of 6 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