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Confused by BE diagnosis and treatment

Posted , 5 users are following.

kerrtexas
kerrtexas

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 ( esophogus ), erosion ( stomach ), normal ( small intestines ) .

Received a letter a month after the exam that stated that my endoscopy exam "was significant for Barretts esophagus;  a benign but precancerous condition. "  The letter then went on to proclaim that everthing 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 sent 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 is a serious diagnosis, seems to me that it would be more appropriate for the Doctor to schedule an appointment to discuss the findings, instead of sending a letter. 

I'm freaked 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 ?

 

1 like, 28 replies

28 Replies

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  • kerrtexas
    kerrtexas

    Posted

    Well...went in to see my GP and was told by the office check-in person that the GP wouldn't see me because she didn't know anything.   She told the office check-in person to tell me all she got was a picture relative to my procedures and that was it. 

    I told them, well, maybe it would be appropriate for her to see what I had to make copies and put them in my file,  Nope - they wouldn't have any of it.   

    I thought that my GP would be professional enough to request ALL pertinent information from the Gastro Doc BEFORE our appointment this morning.. Thought wrong.  

    So...I know MORE than my (could care less, incompetent ) GP , yet, still know nothing in detail about the results of my procedures.  Kind of feel I'm in a worse spot than I was before  rolleyes

    • carmel83758
      carmel83758 kerrtexas

      Posted

      You may have already worked it out through studying and research but you also now know that it is not something serious.
    • kerrtexas
      kerrtexas carmel83758

      Posted

      Yeah, hope so.  Been getting conflicting information from the start of this whole saga, and had my expectations in place that the Primary Care Physician would smooth out the rough spots.  

      The nurse at the Gastro Doctor's office doesn't know much, the Primary Care Physician doesn't know anything - didn't even know I was diagnosed with Barretts, so I hope is isn't something serious.  

      Don't think it is something serious - but due to the void of information a wee bit frustrating.   Calling the Gastro Doctor's office to make an appointment with "him".  

      My trust is damaged though, because I discovered this :

      pqrs barretts compt : 

      The PQRS bonus incentive has been extended through 2014. Eligible Professionals (EPs) who successfully report quality data for the quality reporting period designated by the Secretary of the Department of Health and Human Services for the applicable year will receive a bonus in years 2012 through 2014.

      Incentive payment.s include ;  Barrett’s Esophagus 

      Measure #249 – Esophageal biopsies with a diagnosis of Barrett’s esophagus that also include a statement on dysplasia . 

      So...the Gastro Doc gets a bonus ???  Whaaaaaat ???

      Color me skeptical, wary and nervous.   

       

    • carmel83758
      carmel83758 kerrtexas

      Posted

      Sometimes our anxiety takes over and we cannot think straight. It is hard then to be rational because the fears take over. I can understand why you are sceptical but you have to trust them - at least half way - or there is no point to seeing them.
  • kerrtexas
    kerrtexas

    Posted

    Will say this : regardless of what the medical folks say, I do need to make healthier choices in my life - so the diagnosis of BE definitely is incentive to make changes, no more procratination.  

    Thank-you for putting up with my rant - I feel better after expressing my frustrations.  Thank-you so much for responding, carmel.  

    So...how are you feeling ?  

     

    • carmel83758
      carmel83758 kerrtexas

      Posted

      Most of the people here just need to vent their frustrations and sorrows Kerry, it is understandable. It does not mean you need advice and it does not mean that you are somehow inadequate. We all go through bad patches and need support then. Even the strongest and most capable of people. Having to make healthier life choices should perhaps be seen as the ultimate prize at the end of a long and frustrating journey because - presumably - if this had not all happened you would probably have continued living an unhealthy lifestyle. This may have been the wake up call that was needed. Am going to the hospital next week monday about my problem Kerry and am trying to keep busy with clients and work as much as I can in the meantime. Hope you feel ok today?
    • kerrtexas
      kerrtexas carmel83758

      Posted

       I had steam blasting out my ears earlier.  I was angry,and upset !!!  You helped me to settle down and relax - frustration is still there, but not as acute as it was before our discussion.   

      Yeppers, you are correct, probably wouldn't have changed my habits if not for this...haven't eaten so much fruit and veggies in years as I have in the last week or so. 

      Definitely want to hear from you next Monday...so will be looking for your post, carmel.    As mentioned, you will be in my thoughts and prayers.  Warmest of blessings to you  smile

    • carmel83758
      carmel83758 kerrtexas

      Posted

      If you do not mind me adding this Kerr. When it comes to the fruit and veg concentrate on veg, only one piece of fruit a day at the most because of it's sugar content. Thanks so much for your good wishes for Monday - seems like eyyears away, wish it was now to get it over and done with.
    • kerrtexas
      kerrtexas carmel83758

      Posted

      Carmel, just want to let you know you've been in my thoughts and prayers.  I remember, today was the day for you.   Hope all went well.  smile
    • carmel83758
      carmel83758 kerrtexas

      Posted

      Thank you so much Kerr. It went fine but I thought that the doctor knew less about all of this than me. When she figured out there was no hernia or ulcer she said it is probably gallstones, yet that does not fit with the symptoms at all. She jumped on this idea because of the stomach pains but the other symptoms do not fit. They look for structural problems they cannot see the other stuff. And the do not listen properly. I am finding more and more now that whichever doctor you speak to - or consultant - they know less than we have found out if we have done our research online properly. Yet because we are only the patient they ignore us and what we think very often.
  • kerrtexas
    kerrtexas

    Posted

    UPDATE :  Finally got to talk to the Gastro Doc and he told me that my Barretts is Non-Displasia, 3 to 4 cm, and he said that he suspects I've had it for a long time.  I am on the Protonix ( 40 mg once a day in the AM ) for the rest of my life.   He scheduled another upper endoscopy in 9 months.  

    He apologized for what happened with me having to endure the process just to talk to him.  Apparently, he moved into town recently and has a new office staff that is inexperienced.  He also said my Primary Care Physician was lying and is lazy.  He said that my  Primary Care Doctor is part of the same network as he is, and she could have easily looked up everything he told me on the computer.  

    • carmel83758
      carmel83758 kerrtexas

      Posted

      It is not very impressive is it if they hage staff that are inexperienced or lazy? Why employ them then? Glad you are now in a better place. My thoughts are with you.
  • Barnie
    Barnie kerrtexas

    Posted

    So pleased kerrtexas that you have got some sense from the medical profession at last.  You will be monitored and looked after now and, hopefully, your Barretts will never progress any further than it is now which is how it is for the greater majority of people who have it.  Just make sure you take your meds regularly and look after yourself.  That is the thing none of us know how long we have had it (some people are born with it) we only know when we were diagnosed with it.

    Thanks for the update

    Barnie

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