this is cancer

[goldygirl]

I was diagnosed with this and cannot have endoscopy due to lung disease. I can no longer eat and did not have a good experience with the gi doctor. So my condition cannot be monitored using endoscopy. I have lost a lot of weight, am in a lot of pain, all of my body fat is gone and I think it is a matter of time before it takes my life. how can you live if you cannot eat? People need to know that Barrets means tissue changes and that is bad and that turns into cancer. That is what it means. Why isn't it called cancer  or precancer of the esophagus? I think if it was more lives could be saved. If I had been told that in the beginning, I would have done everything in my power to stop it. Because my gi doc was such a jerk and it was such a bad experience I found out too late. This should not happen to anyone else. Call it what it is..Precancer or cancer, whichever kills you first, of the esophagus!


This discussion is related to Do I seem to have Barrett's Esophagus, Schatzki's Ring, or what?.

[TookaBrody]

I am so sorry to read about your pain.  I just lost my mother to cancer last month.  She had laryngitis-type symtoms (scratchy voice etc.) for weeks and my sister and I urged her to see a doctor.  She was referred to an ears/nose/throat specialist.  The word 'specialist' still makes me cringe.  This doctor listened to her scratchy voice as she listed her symptoms, stuck a flashlight in her mouth to look at the back of her throat, and said, "I've seen this before.  You have acid reflux syndrome.  I'll give you a prescription."  

For three months, she took the pills.  He never suggested a follow up appointment or anything -- just the prescription.  Her voice never recovered.  Again, we insisted she see another doctor.  This doctor suggested a chest x-ray.  My mother was told later that day that she needed a CT scan, as the x-ray showed what was assumed to be cancer throughout her lungs and throat.  The CT scan confirmed this:  she had stage 4 cancer of the lung and larynx.  (By the way, she didn't smoke -- my father was a heavy smoker, and living all her life in a small house and/or apartment with smokers, it was suggested that she contracted lung cancer via second-hand smoke).  

Anyway, it was too late to cure.  My mom always seemed like the healthy one in our family.  She chose to fight for her life as long as possible, taking chemo treatments, radiation, and finally she agreed to the removal of her vocal cords.  She was only 69 years old.  

My message is not to make anyone sad or depressed about this, but to say simply to listen to your body and seek medical advice if you think something is wrong.  And don't believe one doctor's diagnosis -- she put TOO much trust in a doctor who, in my opinion, took my mother's precious life by a misdiagnosis without doing any of the proper tests!  Shameful.

Good luck to you and everyone else out there reading this.  We all need to 'take care of business' when it comes to our health -- even if we are afraid of what we will find out.  It's not just to benefit ourselves, but the people who love us do not want us to be sick.  We owe it to our loved ones to take care of ourselves, too.

Thanks for reading.

[goldygirl]

yeah...according to them it does not mean cancer...it is precancer. To me, anything that is pre cancer needs to be treated and there is no treatment available for this condition. What Barretts esophagus is is precancerous tissue changes in the esophagus. The tissues in my espohagus are what is normally found in the intestine and should not be there.I cant be monitored like I need to be. When I asked my gi  jerk what is barretts as I had never heard of it before, he gave me this mumbo jumbo answer, handed me a paper with this very restrictive diet in which you can have nothing to eat because the diet limits almost everything out there from bread to nuts to seeds to cheese.. and I see other doctors do that. Its pre cancer. I have looked for another gi person but the truth is they themselves understand very little about this disease. That is what is so frustrating. They need to know more about this

[goldygirl]

thank you Margy ...yes I have...The problem is there are no studies or treatment availble for this, I take the proton pump inhibitors and all but it does not help. That's the problem is docors really don't know how to treat this condition.

[Morecambe]

Hi - just a suggestion - why not post your questions on the "expert/doctor" forum?  Maybe Dr Pho knows of a method/location whereby the endoscopy can be performed and maybe he can direct you to a clinic where your condition arises regularly and where there is a greater degree of expertise.

Good luck anyway
Morecambe

[Cheri70]

According to WebMD, having Barrett's increases the chances of cancer, but does not mean you will get it.  "the absolute risk of esophageal cancer for someone with Barrett's esophagus is small — less than 1 percent a year. "

I hope this helps with your anxiety.  Seek out a new GI, just because one was bad doesn't mean you can't find one that will treat you properly and get you feeling better.

[margypops]

I am so sorry you are having a really hard time ,have you tried all avenues,one hears of so many new things out there Put it into the search engine see if there are any new Ideas, put in"Barrett's Desease" Hope something positive turns up soon can you take any other Oppinions? .Let us know