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11/23/2009 09:23 PM

Just diagnosed... confused and very scared

JoshM
Posts: 6
New Member

Greeting everyone,

I've been reading this forum for several days and decided it was time to say hello. I am a 31yo male (6'1" 235lbs) and was diagnosed with Barrett's without dysplasia last Thursday. Aside from some allergies and being overweight, I'm not aware of anything seriously wrong with me. The news has hit me sideways and I've got a lot of things going through my mind. My apologies if this intro is long winded.

A little history... about three years ago I experienced what I'll describe as a 'night attack', which is moderate to severe pain (dull, gnawing kind) in the upper stomach/lower esophagus region with what felt like bloating and a constant need to belch (although I really couldn't). I had never had any persistent issue with heartburn or digestive problems prior to this. The pain would go away within 30 minutes to two hours provided I sat upright and sipped some water. Pepto Bismol or Pepsid seemed to help a little, but not always. These episodes always occur at night after about 4-5 hours of sleep.

Over the next couple years I had a few more of these attacks, maybe 3-4 a year. This past summer they increased in frequency to 1-2 a month and I was finally able to associate them with eating too close to bedtime. I've slipped up a few times since then, but as long as I don't eat 2-3 hours before going horizontal there is no problem.

About two months ago I had an overnight change in symptoms (fine one day, not the next) which prompted me to see a GI specialist. I had no "attack" the night prior. After eating breakfast (banana and a little cereal) I became extremely bloated/full and had the GERD-related "something stuck in throat" sensation. Never had I experienced this before. My appetite went to almost zero and for the following week I wasn't able to eat hardly anything without these sensations. I lost about 5 lbs. and setup my appt ASAP. After about two weeks the symptoms got better but to this day they still come and go.

After the initial appointment, the doc presumed nighttime reflux with gastritis and prescribed 40mg Zegerid once daily. I was also scheduled for an upper endoscopy which happened about two weeks ago. Here were the initial findings straight off the paperwork:

  • Normal mucosa in the whole duodenum (biopsy)
  • Erythema, congestion and friability in the stomach body and antrum compatible with gastritis (biopsy)
  • Normal mucosa in the whole esophagus
  • Irregular z-line (biopsy)
  • Retained fluids in stomach
  • The doc verbally went over the findings right after the procedure and said everything looked normal except for some red irritation in the antrum which is clearly visible on the pictures. He didn't mention anything about the GE junction area and the pictures look normal from what I can tell (I'm not an expert... yet). The biopsy results took about a week and last Thursday I got the automated message that Barrett's Esophagus was tested positive. I assume it came from the irregular z-line biopsy. There were no findings of gastritis or any other results from the other biopsies. I've been switched to Protonix (Zegerid gave me some side effects) and after the diagnosis it was increased to 40mg twice daily.

    Needless to say I've been scouring the internet for days, seeking all the information out there. Sadly, this forum and barrettsinfo.com seem to be the only complete and up-to-date resources on this condition. My follow-up discussion with the doc isn't until Dec. 4th leaving me to stew. A follow-up endoscopy was also recommended in 2-years but I'm not one to sit and wait. I've already decided to see another doctor (in progress), both for a second opinion and to discuss this with an expert on the condition.

    To sum things up, I'm left with a few questions which I'm hoping some of you may be able to shed some light on. Thanks for reading this far Smile...

  • Is it possible to have Barrett's metaplasia with no visible indications?
  • Since I'm relatively young, I'm very concerned that I'm at increased potential for cancer simply because there is more time for it to develop than those diagnosed at the average age (55). Is my concern warranted?
  • I've reached the conclusion that I have have to be aggressive and pro-active with this since no one else will be. At what point should I start serious consideration of visiting Mayo for ablation (very appealing treatment) or other expert treatment? Should I really wait for dysplasia to form?
  • Because I continue to have very infrequent heartburn and mild symptoms otherwise, I can't really tell what the Protonix is doing for me. The thought of more reflux and continued damage to my esophagus without my knowledge scares the crap out of me. Any recommendations here?
  • My brother-in-law was also diagnosed a few years ago. However, a follow-up endoscopy showed no Barrett's. I've read it's extremely rare for Barrett's to heal on its own. Furthermore, there seems to be confusion in the medical community on where exactly to biopsy for Barrett's (difficultly locating the exact GE junction) and how to detect it in the very early stages. I'm still in denial, but is it possible I was misdiagnosed or that it may heal on its own?
  • I've already elevated the head of my bed 8-in., sleeping on my left side as much as possible and no eating 2-3 hours before bedtime. I'm also working on switching to a more alkaline diet (oh boy will this be fun). Any further advice is greatly appreciated.

    Thanks again for reading through my intro. I hope to chime in here again as I learn more and as new findings on my condition arise. Best wishes to you all.

    Post edited by: JoshM, at: 11/23/2009 10:25 PM

    Reply

    11/24/2009 05:47 AM
    dangerousT
    dangerousTPosts: 66
    Member

    Hi and welcome to the group! I understand your concern...I am only 40 and was just dx'd. It was quite a surprise as I've never had any reflux issues in the past. Some here have had the ablation therapy, but I just had an appointment w/ my doc yesterday and he does not recommend the ablation unless there is dysplasia. I did have a scare as my 2nd EGD did show low-grade dyspasia, but 2nd opinion was indefinate for dysplasia. But latest EGD biopsies were clear for dysplasia! Doubling my prilosec helped. I was quite freaked out to begin with, but have calmed now Smile I suggest having a good sit down w/ your doc. There is much infomation out there on the web, but not all of it is up-to-date. My doc recommended the Mayo Clinic site for Barrett's info, they are up-to-date with all the latest and greatest Wink Just google Barrett's and Mayo.

    Keep us posted,

    Terri


    11/24/2009 08:42 AM
    JoshM
    Posts: 6
    New Member

    Hi Terri, thanks for the welcome and quick response. Glad to hear your scare turned out to be nothing. I suppose that shows how the condition CAN improve/regress.

    I will definitely be reviewing all the findings and asking the tough questions with my doc next Friday. Since there's no dysplasia I guess there really isn't much I should do aside from GERD lifestyle changes, which I'm working on.

    Has anyone here had good/noticeable response to taking Carafate for BE? Or is that more for post-treatment only?


    11/25/2009 10:59 PM
    Mubert
    Mubert  
    Posts: 335
    Member

    Hi, Josh! Sorry for not getting back to you sooner, but I've been having major battles with my blood sugar lately. It sound to me like you are doing all of the right things. I'm not sure that Barrett's heals itself; maybe it's just misdiagnosed the first time? At any rate, I would definitely suggest a second opinion. Congrats on getting the bed, diet, and eating times right! Those are the same things suggested by my doctor, and it's worked well for me for almost two years now. For now, I'd wait and see your doctor on Dec 4th, and take a written list of questions you want answered with you. (You don't forget anything that way!) Ask him about sending the pathology report for a second opinion, too. That never hurts. Keep us posted on what you find out from your doctor; we all care! Hugs, Muriel

    11/26/2009 08:49 AM
    JoshM
    Posts: 6
    New Member

    Muriel,

    Thanks for the reassurances, I've calmed down a bit from my initial post and am ready to meet with the doc on the 4th. I'm in DFW and haven't yet selected a 2nd expert to see, but will likely be going to the same one as my brother-in-law. If I don't like the answers from my current GI I'll see how he works out. Thank again!


    12/01/2009 07:31 AM
    NonMarkovian
    Posts: 12
    New Member

    Hi

    I'm 35 and also recently diagnosed. I totally share your concern over the long time span over which the hazard rate is being applied, that was also my most immediate reaction. I've started looking into it but haven't found much info yet.

    I guess one may begin by assuming that the longer period over which we'll be rolling the dice could be partially compensated by the better level of general health associated with younger age - that is, hazard rates not being constant but increasing over time, not unlike what's traditionally been assumed in the actuarial mortality calculations for the general population - but it's just speculation without any empirical base.

    I'll let you know if I manage to find data for a sample where we're better represented.


    12/01/2009 10:00 AM
    JoshM
    Posts: 6
    New Member

    I have yet to find any hard data on this either. I'll ask my doctor this Friday for his opinion, but my assumption is the statistics are still emerging. More and more endoscopes are picking up the condition earlier now compared to a decade ago.

    The best number I've found for cancer risk is is 0.5% per year. Assuming we have another 40 years, I believe that's a 20% lifetime risk of progressing to esophageal cancer. With regular scopes (1-2 years) and pro-active treatment against dysplasia (RFA), cancer should never have the opportunity to form. At least, that's my current game plan.


    12/01/2009 04:46 PM
    NonMarkovian
    Posts: 12
    New Member

    Yes I think I'm looking at the same statistics as you, which is what's reported int he Barrx site quoting from an article by Sharma et al.

    I actually reason in terms of the hazard rate for an "event" defined as the union of cancer + HGD (which while not as bad would probably impact a person's lifestyle to some level of disruption), based on the same sources that hazard rate is at 1.4%. Over 20 years that does not actually equate to 20 x 1.4% = 28%, but to a slightly smaller number, the difference is immaterial over short time horizons but it becomes noticeable over long periods.

    The reason for that difference is that if an event had x probability of happening at year 0, and 1-x probability of not happening, then if it does not happen at year 0 then the following year the probability of the event happening only applies to that 1-x, not to the whole initial event space, and so on.

    In other words, it's like if someone's shooting at you with a gun and does not reload, if the first bullet misses, that's gone, and you only have to care about the remaining ones.

    At any rate, I concur with your summary, at this stage I'm not reviewing life priorities yet on the basis of Barrett's.


    01/13/2010 07:24 AM
    toddlings
    Posts: 44
    Member

    Hello Josh,

    like you I was recently diagnosed with Barrett's no dysplasia. I was pretty scared at first before having my follow-up with the GI. While Barrett's is nothing to take lightly he reassured me that progressing to cancer is pretty rare in the vast majority of cases and even rarer among those initially diagnosed with no dysplasia. He also confirmed there are plenty of people out there in our stage who never even progress to low grade dysplasia much less to cancer.

    Only high grade dysplasia is a strong indicator of subsequent progression to cancer.

    Like you, I was also diagnosed at a young age and instead of looking at it from the negative stand point of "I am going to have this a long time and eventually develop cancer" I am trying to take a positive approach in that it was found early before any dysplasia developed and is now being treated and monitored.

    The other piece of advice I would give you is that standard procedure regarding Barrett's and endoscopies is that you should have another endo ONE YEAR after your initial diagnosis and then every 2-3 years after that (depending on the Dr.) if no dysplasia is found the second time either.

    Post edited by: toddlings, at: 01/13/2010 07:26 AM


    01/13/2010 08:04 AM
    JoshM
    Posts: 6
    New Member

    Howdy Toddlings,

    Thanks for the reply and reassurances. I did have my follow-up appointment and got the answers I was more or less expecting. Doc said there was really no visible evidence of Barrett's and he was surprised by the diagnosis. He classified it as very short segment Barrett's. I take Pantoprazole (Protonix) 40mg twice a day, 1-hr before meals whenever possible.

    He recommended a follow-up endoscopy in 2 years but I had it moved up to 1-year so I can get a better feel for if/how it's changing. In the mean time I'm doing everything I can to stop it which the 1-year endo should also reveal if these methods are helping or not.

    Either way my outlook is much improved. The initial diagnosis of some cronic condition really threw me off.

    Reply

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