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pjwilson83
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Quote pjwilson83 Replybullet Topic: Really scared
    Posted: 07 Oct 2016 at 6:09pm
Hi all, I'm new here. I'm a 33 year old married male with a 5 year old daughter from Glasgow.
I'm fairly fit and healthy, could probably be doing with losing a few pounds, I don't smoke (I used to smoke when I was university but completely stopped after my daughter was born in 2011) and I occasionally drink alcohol (probably 1-2 units per week on average). My diet could be better.... but it could also be worse, I suppose.

Anyway, I'll just right to the point...I had an endoscopy yesterday and the report says I have a 1cm segment of curcumfrential Barrett's epithelium. So 4 biopsies were taken.
I was knocked for six when the nurse told me this. She told me not to worry but obviously that's easier said than done.

I think the reason I am freaking out about it is because of my father; you see, he was diagnosed with Barrett's when he was around my age. For some reason, his last endoscopy was in 2004 when it was reported that "no further action" was required. This was obviously not true as he is now battling terminal stage 4 oesophageal adenocarcinoma, which has spread to his lymph nodes, lungs and liver. We are literally watching him waste away and it is beyond heart-breaking. We are currently investigating why he wasn't getting the proper surveillence for his Barretts.

I'm now scared to death that this will also be my fate in 30 years. Although, I certainly won't be going 10+ years without an endoscopy.
I just feel like this whole thing is going to rule my life now. I feel like I'm going to be scared to eat or drink anything "bad" ever again. And whenever I get heartburn again I know I'm going to panic.
I do not mind improving my diet at all - it will be better for my overall health afterall. I also don't mind giving up things like alcohol.
I am partial to the odd takeaway or night out for dinner with friends etc. So should that all be stopped?

I'm just so confused as to what to do now. Obviously I know I need to wait until I get the biopsy results but the nurse told me this can take up to 4 weeks to be sent to my doctor - is it normal for them to take this long? And what do I do in the meantime? Should I see my doctor to get started on PPI medication? (At the moment i am only take Ranitidine, once daily, 150mg)
Also, even if no dysplasia is found, would there be good justification for me to have an endoscopy every year to keep an eye on things because of my family history? I know they are unpleasant but I wouldn't care.

I'm just so scared and confused right now. I know I don't have cancer but I just feel like my future is so uncertain now. I know that sounds dramatic when there are people out there who DO have cancer, like my poor Dad but I just can't help feeling this way. I guess I am just after some good old reassurance.

Thank you for reading and apologies for the long post!


Edited by pjwilson83 - 07 Oct 2016 at 6:11pm
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jcombs99
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Quote jcombs99 Replybullet Posted: 07 Oct 2016 at 7:44pm
P
Very Good Post !!!
You don't know anything till U see the doctors report lots of OC @ 30 .I feel very bad for your dad the NHS failed him I follow what my Yank Doctor does which is vastly different then the NNS .
    What U do over the few weeks will not change anything so get on PPI's READ Chris's book and go from there don't worry about 30 years from now worry the next few years .
   U have a BAD LOS or a HH(plumbing thing)so U will be FINE if U pay attention .
Had HGD
Jeff

Edited by jcombs99 - 07 Oct 2016 at 7:44pm
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Mtmurray
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Quote Mtmurray Replybullet Posted: 07 Oct 2016 at 8:55pm
P,

I can understand your fears. Chris will tell you we are the lucky ones. Many don't know they have BE, and when they do it's too late. I am
Also sorry to hear about your father.

I started a food log of things that caused me indigestion. This way you have a better idea of your trigger foods. I decided to have a nissen fundoplication to fix my hiatial hernia and (in my case) eliminate my heartburn. This forum is a great place to learn things. The odds of progression are low. Keep that in mind. I worried and stressed for months after diagnosis. I am 36 with two daughters. There will come a time where you worry less and accept things. It will get better.

Matt
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Bobib
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Quote Bobib Replybullet Posted: 07 Oct 2016 at 9:40pm
Hi P. Sorry to hear about your father. Regarding your diagnosis and your fear, I think we all go through the same initial reaction and stages of coming to terms with it. I am sure your fear will be worse than most because of what is happening to your father.

But the fear does reduce over time, and I think the most important thing is to understand as much as you can about the disease and make sure you are getting the right medical treatment.

I was quite worried for the first couple of weeks, but the fear did subside after a while to the extent that after a couple of months, most days, I don't even think about it.
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chrisrob
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Quote chrisrob Replybullet Posted: 07 Oct 2016 at 10:46pm
Hi PJ,

We've corresponded on a different forum previously.
It does help to arm yourself with all the facts.
Visit Barrett's Wessex website and check out all the links - particularly the JOURNEY tab (from diagnosis to treatment) and you may use the linking tab to visit the free book / website: Down With Acid. Or PM me or email chairman@barrettswessex.org.uk with your postal address and I'll send you a printed copy.

Keep on the PPIs; they have a chemo-protective effect reducing the chance of progression by 71% according to this meta-analysis and make sure you get regular surveillance. I don't know how your father managed to go 10 years without a scope but make sure it doesn't happen to you.

I hope things go as well as can be expected for your father. Have you heard the interviews with the radio presenter, Steve Hewlett who is also fighting the cancer/ (You'll find links on this forum here if you're interested.)

Another useful source of help for those affected by the cancer is the Oesophageal Patients Association "delivered by patients for patients". And, of course, we'll do all we can to provide help through this forum.

Regards
Chris
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pjwilson83
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Quote pjwilson83 Replybullet Posted: 09 Oct 2016 at 11:30am
Thanks for all tbe well wishes, folks. I have to say, this is a wonderful forum. Just been reading back some old threads and it's really put my mind at ease.
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mommyto2
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Quote mommyto2 Replybullet Posted: 09 Oct 2016 at 1:40pm
Hi

I hope you are feeling better after reading the posts from the others. I have been through pretty much exactly the same. I was diagnosed shortly after my mother was diagnosed with terminal OC. Unfortunately she is no longer with us. This forum helped me understand a lot more about Barrett's and I have come to terms with my diagnosis and 18 months on, I hardly worry about it. I will PM you as soon as I get some spare time to chat more.

[
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pjwilson83
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Quote pjwilson83 Replybullet Posted: 03 Nov 2016 at 1:56pm
Hi guys, just a quick update.

I still haven't had my biopsy results despite having my endoscopy 4 weeks ago. So i have just phoned my doctors to see if they have heard anything.
The doctor wasn't available to speak to but the receptionist told me they had a letter from the consultant. She just said "everything was normal".
I then asked her if she could read the letter out to me, which she did. It wasn't very detailled - it just said that I had an endoscopy due to reflux symptoms and family history of OAC and that during the endoscopy there was a 1cm ring of suspected Barrett's mucosa, however "the biopsies show no evidence of Barrett's mucosa" and that everything looked normal. It also said that I have to continue taking PPIs. Nothing about any follow up scopes, nothing about intestinal metaplasia or anything like that.

Obviously I am delighted with this. But I'm just a bit confused.

- why did the endoscopist say in his initial report directly after my endoscopy that I had Barrett's? Is it common for Barrett's to be misdiagnosed clinically?

- Are the biopsies reliable? 4 were taken in total. Is it possible that the biopsies simply 'missed' the Barretts and that there is in fact Barrett's mucosa elsewhere?

- Why wasn't I informed of the biopsy results directly? Is it normal to have to chase these things up yourself?

- What about future scopes? Should I be having one anyway, say in a few years, because of my family history, even if i don't have any reflux symptoms?

Sorry, I know I should be really happy about this - and I am. But i can't help thinking there might be a mistake. Especially since they seemed so sure I had a 1cm ring of Barrett's before the biopsy results.
I will give the doctor a phone tomorrow and speak to him but thought I'd come here first and see what you all thought.

Edited by pjwilson83 - 03 Nov 2016 at 1:57pm
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jcombs99
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Quote jcombs99 Replybullet Posted: 03 Nov 2016 at 2:38pm
Had 30 going next week for another . Sounds good ur messed up BUT not Barretts yet!!!   but could change .yes he could've missed the B by poor sample taking BUT BE HAPPY get another scope like 2 years IF they will .It's all in the BIOPSYS not LOOKIN .
Go have a Cheap Glass of French wine U Lucky Dog ..

CHEERs

Edited by jcombs99 - 03 Nov 2016 at 2:39pm
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jcombs99
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Quote jcombs99 Replybullet Posted: 03 Nov 2016 at 3:40pm
Email ur report to me I'll have my Doc review on the 10th .
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