Confused by BE diagnosis and treatment

Digestive health
1

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 ?

 

2

Think it is a case of how the stomach erosion leads to the rest.

3

Thank-you for replying carmel !  I figure he may have suspected the Barrett's and chose not to say anything about it until the biopsy results came back.   

Still am surprised that he only has me taking the Protonix for 90 days, with no recommendations with what to do between the end of the 90 days until he repeats the exam in 6 months to 1 year.  

It also seems he forgot that he already had me taking the Protonix for the erosion in the stomach lining for 120 days.   

From what I've read relative to BE , haven't read of one person being placed on a PPI for 3 - 4 months, then left w/o any kind of treament until the next exam....seems unusual to me for Barrett's, or at least from what I've read about it.  

Sure don't want it to get worse.  

 

4

I think the thing about anything to do with reflux going on is the slight risk that if it continues long enough it can cause the cancer. So they can either describe it as gastric or describe the risk bit, they are both correct.

I was talking to a lady I know today about this and she told me she had acid reflux and went to doctor and had the tests and camera etc and has been on a proton pump inhibiitor for many years.

If you are scared it will get worse why not take control of your diet and increase your alkaline and decrease your acid. Look up acid and alkaline foods etc to do this.

5

Hi Buddy,

Guess you're in the USA by your tag name,well I'm from the UK so this may be of no help to you but:-

Not surprised at 90days on PPI's after all the disputes about its long-term adverse effects,I actually stopped taking mine and opted for natural cures/aids so I use Slipper Elm with honey and Oats instead and it's helped me a lot,after a year and a half the PPI's did nothing for me except make me feel worse,I can eat anything again now,but in slightly smaller amounts.

Regarding your overdue letter,in the UK here any appointments,letters of follow-up etc are now done by a company acting on behalf of NHS and I have had mistakes made due to this plus letters arriving after I've had the appointment,not the same in America surely.

Your stomach erosion problem years ago would probably been labelled an ulcer,but they don't like using that word now,that is what I think I have as I have never had reflux that much,just distension and sensitive stomach.

So with you having no throat of upper esophagus problems you may well recover fully,like I did years ago,at least I hope so.

No idea about Protonix,sounds like a muscle-builder to me so can't help you there.

Anyway best of luck,hope you don't suffer too long,happy eating!

Regards Malc

 

6

Hi Kerry

I am a sufferer of Barretts too (in the UK) and you are right in thinking that it is unusual to be told to only take it for a few months.  You are always advised that you need to take it for ever as far as I am aware for the diagnosis of Barretts.  When I first read your post I did wonder whether they had got you mixed up with someone else's diagnosis - somehow got the two together.  This may be worth checking out in case they have.  

The PPI's also very rarely reverse the condition - they just control the acid to avoid making the situation worse.  You are then offered scopes every 2 years, if everything is normal, for life.

My advice to you would be to make an appointment with the said Doctor and clarify exactly what is going on.  Taking PPI's for 90 days would heal an ulcer.  Please do not worry unduly as although Barretts does sound a scary diagnosis, at first, it is not a death sentence as there is a very very low chance of if it ever developing into anything more sinister.  With the ongoing monitoring they will not allow that to happen anyway.  In some ways, we are the lucky ones because we are being monitored - there are many more out there walking around who do not know they have it.

I hope this helps to put it into perspective for you.

Take care

Barnie 

7

Appreciate the reply malcolm, and what you wrote was of help to me, so thank-you for responding.    You brought up one of the issues, is the lack of information from the Gastroenterologist that performed the exam.    

What to do after the use of the Protonix ?( Is a PPI, but yes, does sound like a muscle-builder )  

To possibly go 7 months without any treatment whatsoever doesn't seem right for Barretts.  And in speaking to the nurse about it, she never mentioned any treatments until the next endoscopy.  

I did call my GP and am hoping she will clear up my confusion.  

As far as America's health coverage, that is changing with the implimentation of Obamacare.  

 

8

Hello Barnie !  

I made an appointment to discuss this with my GP, and hopefully she will clear up the confusion.   Without talking to the doctor(s), my imagination is running wild creating numerous scenarios, fueling the anxiety.   

I did read that there are quite a few people out there that have Barretts and haven't any idea.  My wife refuses to get a test done - and she has terrible GERD(?), sometimes waking up during night choking.   She said she doesn't want to know.   

In knowing, even if the treatment process is starting out "not" quite appropriately, or if a mistake was made, at least the issues are being addressed and hopefully have been caught and stopped in their tracks. 

Thank-you for responding Barnie.  smile 

Kindest Regards, KT 

 

 

 

9

Fear is a good motivator.  Have begun to change my diet and am looking into decreasing my acid, while increasing my alkaline - after confirming some details with my GP.  

That's my concern, as with your lady friend, is everyone else seems to be taking the PPI's for the duration.   I don't know if the Gastroenterologist  is going to do a follow up in 90 days to see how I'm doing with the PPI, and then renew the prescription, or change it.  

Will see what happens after talking to my GP.  

 

10

Fear must be the strongest motivator there is. Good luck with it and please let me know how you get on. I am going for my endoscopy Monday week and very nervous.

11

Thank-you, I will do that carmel.  Same with you, let me know how your endoscopy turns out.   Don't know if you're religious or not, but my thoughts and prayers are  with you carmel.  smile

12

Hi Kerrtexas

You are welcome and I will be interested in your outcome too.  I forgot to mention that we have the Halo treatment should the cells change into a higher grade.  This is where the cells are lasered by a special machine and clears the Barretts altogether.  So, relax and try not to worry unduly.

Maybe you could raise the head of your bed a few inches which would help your wife's nightime reflux i.e. using gravity to keep it down.  She would be wise to get it checked but i understand how she feels as I have a tendency to be like that too.

Look forward to your update

Barnie

13

Thanks for your kind thoughts . I find the anxiety quite difficult so have been trying hard to keep busy to take my mind off of it. I am not religious but am a spiritual person who believes in meditation calm and peace. I keep reminding myself that it cannot be serious because my first tummy episode was after eating a clove of garlic and eating something would not being on the big c instantly. This episode started when I took three probiotics. Inbetween it has come and gone, which it would not do if the big c. Feels quite bad today so did some gardening and work. Would be great if the day was sooner so I did not have this worry for another ten days or more.

14

You're welcome, carmel.  8^)

You brought up the trap we seem to fall into with this type of situation. Waiting is the worst.   Don't know what to think, afraid to think either way, good or oh my !!!  Feel that whatever I envision with the Doctor, the act of envisioning how the appointment plays out will in some way jinx the outcome.  Does that make sense ?

To avoid falling into a mental loop of possibilites, keeping busy trying to not think about what the Doctor will ultimately say does help.  .  

Yes, meditation is awesome.  I use photography as my method of distraction.  Behind the camera, looking through a lens, creates a separation of mind from body of sorts. 

I also felt the same way - wanting the day of my appointments to be sooner ( meaning: right now ! ), but then realized that time goes fast enough as it is, so really "try" to make the most of the here and now

Not a medical professional in any way shape or form, but agree with you regarding the garlic, probiotics and such.  Kinda surprised you had trouble with probiotics, a lot of people tell me they are the cat's meow now-a-days.  

 

15

Probiotics help a lot of people but if you dont have an imbalance maybe it is a bad idea to take them.

16

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

17

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

18

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.   

 

19

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 ?  

 

20

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.