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    Old 05-13-2004, 03:05 PM   #1
    Michaelo
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    Barrett's diagnosis

    I was diagnosed with Barrett's Disease in March, low grade dysplasia. My GI specialist who did the Endoscopy just had his nurse call me with the news, and he did not change the date of the followup appointment made the day of the exam (the appt. date is May 26th) even though he found out about the biopsies a few days later.
    I've seen my PCP since then, and he told me sort of that I don't "fit the profile" of someone who has to worry about Barrett's developing into something worse (I'm 43, 5'10", 160lbs, no overt signs of heartburn or reflux). However I'm skeptical of the idea that I'm somehow "exempt" from how Barrett's works and the possibility of it developing into something much worse, although I know the odds of that are relatively low.
    So I'll outline my math, and maybe you all can let me know if I'm off or correct or somewhere in between.
    - If you have Barrett's Esophagus, the progression/mechanics of it progress pretty much the same regardless of the age and otherwise good health of the patient.
    - In the next 5-10 years, if I'm in a group of about 15-20 people with Barrett's, one of us will develop Esophogeal Cancer.
    - In a group of 4 people with Esophogeal Cancer, one of the four will still make it/be around after 5 years.

    Another question is, since this was just ran across in a biopsy recently how do I determine at what point in time I should assign it starting progression - so when does the 5-10 year span of time I referred to above actually start for me? I suppose I really have no other true reference point other than when it was first found.

    And have any of you seen the same sort of disinterest or lack of urgency on the part of your GI doc after a Barrett's diagnosis, as I have?

    Thanks in advance y'all.

     
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    Old 05-13-2004, 04:30 PM   #2
    ventcrew
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    Re: Barrett's diagnosis

    HI,

    I too was diagnosed with Barretts 3 years ago. I had an Endo done a year after and it showed that I no longer had the bad cells, my esophagus had gotten better. I just had an Endo done yesterday along with a biopsy that I will find out the results on Monday. My Gastro said my esophagus looked wonderful. Only one little area of inflamation. I asked my Gasto about Cancer and he said that only 6% of people with Barretts get Cancer and that my cells had actually gotten better with meds and showed no sign of Barretts anymore. He is not worried at all of me getting cancer but said we will continue to to Endo's with biopsies every year to year and a half to keep an eye on things. If my biopsies come back bad then I have to get fundoplication surgery. I hope this helps. By the way I am 47 years old and have had gerd for about 10 years.

    Karen
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    Old 05-14-2004, 07:50 AM   #3
    Katie G
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    Smile Re: Barrett's diagnosis

    Hi there - I was diagnosed with Barrett's esophagus back in 1999 (had already been suffering reflux for years anyway and was diagnosed with GERD in 1996). I was on 20 mg Prilosec after first being diagnosed with GERD, but in '99 since the GERD had obviously worsened, the PPI was doubled. I opted to have Nissan fundoplication in 2001 since my lower esophageal sphincter was weak, and would never improve on meds alone.

    Your stats are right on according to what my doctor told me. There is increased risk of esophageal cancer with Barrett's, but it's not necessarily a death sentence if caught early. Prior to my fundo surgery, my doctor wanted to do endos every year, unless the Barrett's worsened, then surgery would be unavoidable. Two years after the Barrett's diagnosis and much research on Barrett's, cancer, and surgery, I opted to have the surgery. I had an endo done one year after surgery and everything looked good; I will still have endos done every 2 years just to make sure everything is still good. I no longer take PPIs (they weren't doing a whole lot for me anyway).

    So be prepared to undergo endos every year or two to monitor your situation. According to my doctor, esophageal cancer can be slow in progression and curable if caught early. Take care of your health and follow up with regular endos.

    Good luck to you,
    Katie G

     
    Old 05-16-2004, 12:38 AM   #4
    sara52
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    Re: Barrett's diagnosis

    Hi, I also have Barrett's with LGD (low grade dysplasia). With LGD you will have EGDs and biopsies every 6 months, atleast for the first year. If you haven't progressed any and you and your Dr. are both comfortable then you might only need them yearly after the first year. Do not go longer than a year with LGD before biopsies..As for the numbers game, you will make yourself nuts if you try to figure that out..There are so many different interpretations of the numbers that I have given up on making sense of them..I do know the odds are greatly in our favor. At my Gis office, he and his associates have 400 + pts. with Barrett's esophagus, only 1 of them have turned to cancer. In some respects we are lucky because we know what we have and can catch changes through surveillance and biopsies. Most people that have adenocarcinoma from Barrett's were diagnosed in the cancer stage and never knew they had Barrett's or acid reflux disease.

    Once you have throughly researched and gotten educated on this illness you will realize there have been many erroneous Barrett's esophagus diagnosis. Most people, especially with dysplasia, will have their biopsy slides sent for a second opinion..I know John Hopkins Univ. offers this for about 200.00. Most folks insurance will cover that cost of a second opinion.

    Another way we are lucky is the amt. of research and clinical trials that are currently going on at almost all major medical university's and hospital's. There are trials testing the benefits of COX-2 inhibitors (celebrex) as a way of slowing or stopping Barrett's progression. The theory on that study is the belief that the progression may have an inflammatory process. Other studies are testing genetics, specifically the P6 and P53 genes. They are looking for defects in those genes and hopefully one day be able to tell who might be more likely to progress from who won't. It would be a way of stepping up surveillance in some and slowing down surveillance in others. As it stands right now, there is absoluetly no way any Dr. can tell you if you will or won't progress, even though the numbers are comforting...

    Here is why I don't trust or put my faith in the numbers...Go to any top notch (JH, CCF, MAYO, Seattle barrett's esophagus program, etc.) medical univ. or hosp. site and they will tell you how good the numbers all look. Read a little more on those same sites and include the American Cancer Association site and you will read that adenocarcinoma of the esophagus from Barrett's esophagus is the fastest growing, by incidence, cancer in the western world and has been for more than a decade. Combine all that with the high percent of erroneous diagnosis that might be getting thrown in with the (barrett's) numbers before the diagnosis has been reversed and it could greatly effect any math..

    Only a very rude Dr. would not personally talk to his pts. and give them a Barrett's diagnosis. I think it's a sad thing he had his nurse call you instead of him doing it himself. He had to know you would have questions...I personlly don't worry much about progressing anymore. I do what I know I have to do, my Drs. do what they need to do, and the rest is up to a higher power.

    Write out every question you have and take it with you to your upcoming Dr. appt.

    Sara

     
    Old 05-18-2004, 07:59 AM   #5
    Michaelo
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    Re: Barrett's diagnosis

    If surgery is recommended, I'm definitely going for a 2nd opinion. I have never had any surgery, and fundoplasty (sp?) seems pretty invasive. What's the usual recovery time?

     
    Old 05-18-2004, 08:33 AM   #6
    sara52
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    Re: Barrett's diagnosis

    Mich, I hope you understand that fundoplication is not a cure for Barrett's esophagus. The only cure is esophagectomy and that is only recommended when you have high-grade dysplasia. Fundoplication creates a new LES to stop reflux and the hope is that if reflux gets stopped then barrett's will also stop progressing. That is no guarantee that it will. Even people who have a small amt of barrett's and whose biopsies show clean after a fundoplication will still need scheduled surveillance EGDs and biopsies..Fundoplications initial recovery is really not all that long and most return to work at about 2 weeks with a lifting restriction for several months if they also had a hernia repair. Gas bloat is very common after this surgery, atleast for me it was, I still have alot of it....Returning to a normal diet is very challenging after this surgery..You have to go very slow introducing foods and solids back into your diet....I have LGD and long segment Barrett's. Following surgery, I had went from 6.5cm to 6cm of barrett's esophagus...Many people have a very short segment 0.5cm of Barrett's and for them surgery seems to eradicate their barrett's, as is evident with their clean biopsies...Most important if considering fundoplication is to make certain you have an excellent surgeon who has not only done many fundoplications but has done alot of them on Barrett's pts..The rules change with Barrett's and since they are working right in the same area as the barrett's it is important to have someone that can make sure the barrett's area doesn't get mixed into the new wrap thus making it very hard to see at EGD and even harder to biopsy...Alot to think about when considering surgery, but better to think about them beforehand and get all your questions answered first than to proceed and wish later you had asked about these things..I wish you the very best of luck in whatever you decide....Sara

    Last edited by sara52; 05-18-2004 at 07:58 PM.

     
    Old 05-19-2004, 08:13 AM   #7
    Katie G
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    Smile Re: Barrett's diagnosis

    Quote:
    Originally Posted by Michaelo
    If surgery is recommended, I'm definitely going for a 2nd opinion. I have never had any surgery, and fundoplasty (sp?) seems pretty invasive. What's the usual recovery time?

    Hi there - you're right - fundoplication surgery is invasive. I had it done in 2001 after receiving a diagnosis of Barrett's esophagus in '99. I eventually decided to have the surgery because I found out my lower esophageal sphincter was weak, and no amount of PPI or any other med was going to change that, so even if my reflux was reduced by PPIs, I was still refluxing and damaging my esophagus. Good for you to decide on a 2nd opinion if needed. The only reason I didn't get a 2nd opinion was because I had spent 2 years researching Barrett's, fundoplication, pros/cons of the surgery, and even e-mailed others who had it done. I read success and horror stories, but because I trusted my surgeon completely, and he had done several hundreds of these procedures already, I went into surgery willingly.

    REcovery for me was 2 weeks off work completely, then one week at 1/2 time, and then full return after that. I basically have a desk job (I'm a clinical instructor at a university) so returned to work sooner than someone with a more physically challenging job. You have to be careful and follow weight restrictions after surgery for about 6 weeks. The most problematic part of recovery is having to modify your diet to full liquid for 2 weeks, then puree texture for a week, progress to soft and finally regular after about 6 weeks. I still have extreme difficulty burping (which can cause chest pain with the trapped gas - it really hurts!!) and I'll never be able to vomit again. But I can live with that - at least I'm now Barrett's free, and hope to be forever.

    Keep us posted on your health,
    Katie G

     
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