Newly Diagnosed at Young Age, Very Scared...

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Hello,

I've been recently diagnosed with Barrett's at a fairly young age. I'm 29 and otherwise in perfect health - not overweight, never smoked, exercise, only drink socially. My father has had it for a few years, but was diagnosed later in life and my aunt had esophageal cancer that she detected very late in stages and passed from complications (not from cancer so i'm told) - so it's clear there is some history there.

I think what I'm hoping most for, is to just connect with others and hear success stories that this is something totally livable with and not putting a cap on my life years. I've googled and of course, everything comes up mentioning Cancer - which is terrifying. Additionally, I've read some things from others my own age about how they're coming to terms with potentially leaving their children and spouses behind, which is even more painful to read.

My doctor mentioned my size is very small and there is no dysplasia - which sounds positive. I was prescribed a dosage of PPI's and have been researching diet lifestyles.

More or less, I'm just hoping to hear that I have many, many years ahead of me and I can go on to live life as long and normally as any other person without Barrett's. It is devastating to think that my life could be cut short over something like acid reflux. I also worry that being diagnosed so young, and having more years to live with the disease, will shorten my life, too.

Have many people lived long years with maintaining this?

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15 Replies

  • Posted

    I would get a second opinion if you haven't already . I was diagnosed with Barrett's, had a second opinion a few years later, that informed me the test were negative. I was around 32 when I was diagnosed with Barrett's and I have a feeling the doctors push prescription PPIs on us young people so they get their kickbacks from Big Pharma. I stopped taking 40 mg omeprazol, because it was prematurely thinning my hair out. I'm about to turn 37 in April and truly never felt better in my life. I occasionally take over the counter Pepcid complete for any acid reflux flare up, which doesn't happen often. Try not to worry too much, you will live a long life:)

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    • Posted

      Hey Jon,

      I've had reflux symptoms for most of my late teens, early 20's so I feel as though this diagnosis could be correct, but I have wondered about a second opinion. I'm happy to hear that yours was a fluke and there is no Barret's in your case. My heart would feel so much more at ease if I received this news. When you went for a second opinion, did they scope you again themselves or just review the materials the prior doctor completed?

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    • Posted

      I've had acid reflux symptoms since I was a preteen- I would get it from drinking lemonade and orange juice, so I wouldn't necessarily correlate Barret's with the age at when acid reflux first started. My second opinion was an Endoscopy with biopsy of the tissue. Even in my recent checkup with my PCP she was trying to push me on PPI's daily even though I have no Barrett's. Big Pharma is unfortunately involved in doctors pushing drugs. For that reason alone I would get a second opinion.

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    • Posted

      Did they biopsy you for the first endoscopy? I was biopsied for mine and it came back showing Barrett's. Were both of your endoscopies biopsied and one showed up and the other didn't?

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    • Posted

      I had both endos biopsied. First one showed Barrett's and the second one was negative. My GI doctor took me off PPI's for good! Many who post here are insightful and make very good points, with that being said, I don't see many advocating receiving a 2nd opinion and just advise taking your PPI's like a good patient. That didn't fly for me when I was poorly diagnosed. Even if it's a small chance that the 2nd one comes back negative, the peace of mind is worth it. I hope your feeling better today. 😃

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  • Posted

    i have intestimal metaplasia two doctors from different universities told me its a shot in the dark that it could develop into cancer barrets is similar risks which is very low

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  • Posted

    Please don't worry yourself silly over this. Whilst the initial diagnosis is somewhat alarming it should have been put into some kind of context for you by the health professionals. I have had Barrett's for over twenty years and live a normal, otherwise healthy life. I have been on Lansoprazole (Gastro-resistant) capsules for decades now, as Barrett's was preceded by a Hiatus Hernia. I have to monitor my diet, but not overly strictly, I just know that an excess of pastries, spicy food and/or copious amounts of alcohol can cause discomfort, but that is no great hardship to keep a watchful eye on that. I am now in my sixties and was told many years ago that Barrett's is something that many people die WITH, (found after death, but not the cause of their demise,) rather than die OF, (being the actual cause of death). I have to have fairly regular endoscopies, to monitor the problem, but again, that is a small price to pay, and they’re every few years rather than more frequently.

    As time passes, and you get on with life, the diagnosis and its rare, but possible outcomes (God bless Google!) will fade into the back of your mind, where I suggest you leave them. I can fully understand your anxiety but please don’t worry, with the medication and frequent monitoring, you will have many many years ahead of you, so please go out and enjoy them.

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    • Posted

      Thank you so much for your kindness and your reassurance. These are the things that I definitely need to hear. It's relieving to hear that you've been living many years with this. Have you seen any progression since your diagnosis? For me the anxiety is so harsh right now, just dwelling on the what if's. I feel like I start to get to a good place and then I wake up feeling as if I have hit the reset button, with a lump in my throat of fear and sadness.

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    • Posted

      Hi, you're welcome. My "condition" hasn't changed one iota over the years. The tablets fully control my acid reflux, and although long-term reliance on a PPI's isn't ideal, the alternatives aren't either. I live a full and active life, and although I’m fortunate enough to have retired now, it made no difference at all to my employment and it did not cause even one day of sickness over the years. When we put it into perspective, we are lucky enough to know that we have a condition that may (but rarely) turn nasty, but we have the power in our own hands to moderate our diet slightly, to perhaps keep an eye on our weight ( not always successfully!), and to take medication for life, to assuage the effects. The regular monitoring is another safety net that I’m grateful for. That is a lot more than some others get, so, for one, I try to have a glass half full attitude. Don’t be down or sad, be confident that this bump in the road on life's journey is a minor setback and get on with your travels! You've got thousands of great miles ahead of you. I don't mean to sound twee but be positive, you're in good hands, Yours.

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    • Posted

      Thank you so, so much for this! I've taken a screen shot just to re-read in times of worry. I do hope the anxiety quiets soon.

      Also, not sure how much experience you have with medications, but I'm currently on 20mg of pantoprazole (protonix) - do you feel that might be too low? I notice whenever I eat or drink water, I get a burp that will taste like what i've eaten, but doesn't come with any burning, etc.

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    • Posted

      Hello Kea

      I am another long-timer - about 15 years ago I was diagnosed with Barretts and have lived a good life without overly worrying about things. I too am on 20 mg Omeprazole. Please don't worry unduly as Alan has said. It is very rare for the cells to change and even if they do it is gradual where it would be picked up very early. There is even more good news as they can now laser any cells that have changed back to normality and this is offered in quite a few hospitals now. Just make sure that you take your PPI as there have been studies done which have concluded that PPI's give a good percentage of protection against cells changing. Try and avoid your really bad trigger foods to avoid the acid reflux where you can and make sure you get your regular endoscopes which should be every 2 or 3 years here in the UK.

      You will be fine and when you have had time to digest the diagnosis (we all feel that kind of shock when first diagnosed) you will get it all into perspective.

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    • Posted

      Hi Bernie,

      Thank you so much for your kindness and for sharing your story. I so appreciate it. I think my biggest fear is my age of onset (29) and how i'll have to dodge the cancer bullet for another 40+ years if i'm lucky enough to live that long. That feels like the scariest and saddest part for me.

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    • Posted

      I understand what you must be feeling but really you have no need to worry on this particular thing. Even (and it is rare) if the cells do change it will be picked up at a very early stage and lasered away. All of our lives we are having to dodge bullets but it is just that you know about this particular bullet which is a good thing as you are being monitored. There are lots of people walking around who have Barretts and aren't aware they have it . Just make sure you attend all your appointments for your scopes and take your PPI - that is all you can really do. Wishing you all the best and enjoy life.

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  • Posted

    I assume that a consultant, or at least a medical expert in Gastro Intestinal issues has diagnosed Barrett's and prescribed the appropriate medication for you. No two people are the same, and the treatment obviously is therefore different. If you feel that the medication isn’t working for you, speak again to your GP for it to be reviewed, but I'd give it a while to kick in before doing so. Good luck, and stop worrying!

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  • Posted

    Hi all - I followed up with my GI office via email to ask for the size of the segment that showed my barrett's esophagus. The nurse in the office replied with: "I believe it's only measured when it's positive for dysplasia or metaplasia."

    That doesn't seem right. Surely they would have had to measure this, correct? My doctor claimed it was "very small" when I spoke with her, but now there is no mention of the sizing. I don't have a good feeling about htis.

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