Freaked Out and Confused with BE Diagnosis (and treatment ???)

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New Member

Date Joined Jul 2014
Total Posts : 3
   Posted 7/3/2014 1:51 PM (GMT -6)   
Had an endoscopy done and soon after the exam, the Doctor told me he found some stomach erosion, easy to heal and prescribed Protonix 40 mg once a day for 120 days. Everything else looked normal. He even gave me a cartoon type drawing that had notes on it; normal ( esophagus ), erosion ( stomach ), normal ( small intestines ) .
Received a letter a month after the exam that stated that my endoscopy exam "was significant for Barrett's esophagus; a benign but precancerous condition. " The letter then went on to proclaim that everything else was normal in entirety.
He recommended 90 days of Protonix, then a repeat endoscopy exam in 6 to 12 months.
No mention of stomach erosion in the letter at all.
Called the Doctor's office and spoke to a nurse ( Doc unavailable ) to ask ( after reading up on BE ) if it was Non-Dyplasia or other ? She replied that it was Non-Dyplasia.
I asked her how much of my esophagus is affected, " Don't know. "
I asked her why the letter they sent did not mention the stomach erosion? She said she had no idea and that wasn't in the Doctor's notes.
I asked her if the Protonix would reverse the BE and she said "yes".
I asked when I should call to make an appointment for the follow-up exam, she said they would send a letter.
So....I am confused.
Why would the Doctor prescribe only "90 days" of a PPI ?
What happened to the "120 days" of Protonix for the stomach erosion ?
The letter is dated about a week after the exam, why did I receive it almost a month later?
BE seems to be a serious diagnosis, I believe it would have been more appropriate for the Doctor to schedule an appointment to discuss the findings, instead of sending a letter.
I'm freaking out about this, and am suspicious with how the Doctor is handling this situation. Anyone's input would be appreciated and has anyone else heard or experienced something similar ?

Post Edited (DaveJones) : 7/3/2014 1:00:02 PM (GMT-6)

Veteran Member

Date Joined Apr 2011
Total Posts : 1604
   Posted 7/3/2014 3:47 PM (GMT -6)   

I've bumped up the Barretts thread for you. It's really not worthy of great alarm if you don't have dysplasia. Quite a few of us have it and it just kind of hangs around with the GERD, as a separate entity really and requiring monitoring. Treatment of the GERD may improve Barretts, but there's no guarantee about how much. Sometimes it spontaneously regresses - there are lots of things still not known about it. The thing to remember is that there are lots of folk walking around with it and plenty who don't even know they have it! As for being precancerous, your risk of the other more common cancers like lung, bladder and bowel, are much higher and yet we don't freak about those all the time. It's also important to note from the research that when you look at people with Barretts and look at deaths from ALL causes, the biggest cause of death is heart disease and nothing to do with the Barretts.

It sounds like your histology showed Barretts, hence the delay in giving you this information.

As you say, you don't yet know the size of the affected area, so I would try to find that out. It's very common to have a very small "splashback" area of Barretts just above the LES, so I would try to find that out.

As for PPI treatment, it depends on your response and how you feel at the 90 day mark, but I would recommend gradual withdrawal as you can feel pretty rough if you stop it suddenly and get acid rebound.

Hope that helps,

GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

New Member

Date Joined Jul 2014
Total Posts : 3
   Posted 7/3/2014 4:40 PM (GMT -6)   
Thank-you for the reply and bumping up the Barrett's thread for me. I did make an appointment with my GP, and am hopeful she is able to provide more answers. I just received the letter on July 1st.

It is awesome to read what you were so kind to write - helps ease my apprehension quite a bit.

I also am affected by chronic anxiety / panic attacks (15 years). Finding out about the Barrett's has been feeding that beasty.

I'm second guessing what I've been told by the nurse. The nurse said that I didn't have dysplasia, however, she didn't know much else. So...was she correct about the dysplasia ? Or did she guess ?

I do fit into the high risk category. Over-weight, ex-(heavy)-smoker, poor diet and lack of exercise. Already making changes in those areas. Fear can be a great motivator. That also is in the back of my mind - that he wrote it to motivate me to make healthy choices.

With what you presented, feel far more relaxed, however, am still highly motivated to make changes in my lifestyle.

Agree with you about the PPI --- another gemstone --- reading about other people's experiences. Hadn't a clue and would have just stopped if nobody said anything about reducing it slowly. Feel that (1x) 40 mg of Protonix in the AM is rather a small dose, isn't it ?

I just feel that the Doc left a lot of gaps open that he should have filled-in with what is and what should be done.

Thank-you again MMM ! Hoping the GP will fill in those gaps. :)

New Member

Date Joined Jul 2014
Total Posts : 3
   Posted 7/22/2014 6:43 PM (GMT -6)   
Update : Finally was able to speak with the Gastroenterologist and he confirmed that I am Non-Dysplasia, the amount of affected esophagus is 3 to 4 cm. . The Doc also said the 90 days of Protonix was a "trial" period, with no adverse reactions noted, he extended the use of it indefinitely. He also said he would recommend the repeat endoscopy be done within a 9 to 12 month window; 6 months being too soon.

He also mentioned that although Barrett's isn't something that can be "carbon dated", he suspects I've had it for a long time.

Forum Moderator

Date Joined Feb 2009
Total Posts : 7188
   Posted 7/22/2014 9:29 PM (GMT -6)   
Hi DaveJones,

Thanks for getting back to the forum with an update. These threads are helpful, and we all learn from the experiences of others. Glad you finally got a chance to discuss your condition more fully with your doctor. It seems to me that the treatment plan makes sense. Good luck with your recovery!

Very best wishes!

GERD/Heartburn Moderator
Nissen Fundoplication 2/09

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle
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