I was diagnosed with small patch of Barrett’s 7 years ago. Been taking Prilosec ever since. Just had another endoscopy yesterday. Doc told my spouse (while I was still under sedation) that he found two nodules but not concerned about these and to get another endo in 3 years. Other than that appeared good. As almost always here in US biopsies were taken and waiting results. I know doc not concerned about nodules but I can’t stop worrying about results!
I can understand worrying about it. I've been doing nothing but worrying since my diagnosis. It seems like I spend most of my time worrying. Why do they wait so long for the third endoscopy? They have the first one and then the second after a year and then another in 3-5 years? That seems like too long.
As you can tell, I’m a worrier too! All I think is nodules, nodules, nodules even though doc said he wasn’t concerned. And as it’s been explained to me they wait three years if all looks good at last test since this is slow to progress if it progresses at all. Nonetheless I am sick with worry about results!
After I was diagnosed with High dysplasia Barretts, I had Scopes every three months until I received 3 clean reports. Now it's every 6 months, (Been 18 months with this format.) I will have to have every year after that. If your nodules are not pre-cancerous, the protocol is different. Atleast where I am in Florida.
My oh my! That’s a lot of scopes! So now how long to your next one? 6 months or 18? All I know from my doc here in Texas is from my past situation - a scope one year from first diagnosis without dysphasia and then 5 years after all looked good. Due to insurance I went after 6 years for my latest.
I ve just had a repeat endoscopy as they found low grade dysplasia. This time they found a nodule and took lots of biopsies. I m worried sick as that word sounds like it’s nasty. To read that your doctors have seen nodules but are not concerned puts my mind at ease a bit. Guess we just have to wait for results. It’s 6 weeks for me. Fingers crossed.
I try and sit up on pillows I don't have my bed raised or a wedge yet. I've been off work this week due to an attack of severe Diverticulitis and cystitis and I have to wait to get the money.
It’s a challenge not to worry. Though my doc wasn’t concerned but I still fear! Apparently nodes can be benign, pre-c or c! I’m hoping the doc knows by sight what’s good vs not so good! 6 weeks is a long wait. It’s 1 week or less with my doc. Oh, don’t read Internet articles. It can increase anxiety! Let us know results.
Try not to worry too much. If the results show cancer, you probably will be told before the 6 week post visit. I had cysts in my esophagus for 30 years before one showed cancer. I received a call within 2 days on that one.
Barb, if the nodules show cancer, or even high-grade dysplasia, you'll be notified. No news is good news. However, I've been told by several doctors that 2 years between scopes is standard for Barretts so you might want to get a 2nd opinion on that. I actually had them every year for several years and then went to a 2 year rotation.
Have you been on a PPI for 30 years? They say the only way to stop progression is to be on one but they are proven to be so bad for you. I am on one now and it worries me. What did they do for the cancer? Remove it?
Here in the states they say the first one after a year and then in 3-5 years. I think that is way to long to wait for something as serious as this.
Actually, I'm in Texas and just recently was told by 4 different doctors that 2 years is standard protocol. I agree completely with you that 3 - 5 years is too long. Barrett's doesn't usually develop into cancer, but sometimes it does, and mine did. If I'd had to wait 3 - 5 years for an endoscopy instead of two, I'd be looking at an entirely different prognosis.
Very true I completely agree with you. I'm in Iowa and I'm on state insurance I wonder if that is the difference?
I suppose that could have something to do with it. I've been under a few different insurance policies since I was first diagnosed almost 30 years ago. After the initial endoscopy was approved and a diagnosis of Barrett's was made, there has never been a problem having the endoscopies as often as every year. Because I was only 32 or so when I was first diagnosed, the insurance balked a little because Barrett's used to be extremely rare in young women. That's not the case so much anymore. Either way, a doctor can usually appeal to an insurance company to get procedures approved. Last month the company originally denied the PET scan I needed, but then the doctor had a phone call with them and it was approved. He said that it's just a game the insurance companies play.
Thank you i will keep that in mind. I am supposed to have another one in a year. Have you cut out any foods from your diet in the 30 years? Any tips for us new to this?
Relief! Nodules benign and all looks normal except for inflamed stomach.
I had been on a PPI for about 20 years when the 20 year studies started showing evidence of osteoporosis in users. I also knew that I was never able to give blood when I was taking them because my blood count was always just a little too low. At that point I had surgery - a Nissan's fundoplication - and I no longer needed medication.
As for the cancer, I will be having my esophagus removed on Feb. 6. I've now had several scopes and scans and the doctors don't believe that the cancer has spread. Assuming that proves to be true after the surgery and biopsies done then, I won't have to have chemo or radiation.
I probably didn't cut out as many things as I could/should have. It didn't seem to matter what I ate, with the exception of a few things, so I ate whatever I wanted. I guess that grapefruit and pineapple were the two things that I couldn't eat at all, because of the acid. I've always loved spicy food but the spiciness has been reduced with age. I didn't drink or smoke so I didn't have to cut those things out, but if you do, I would definitely advice that you stop. I had to cut back on coffee, but I didn't cut it out altogether. I sometimes adjusted on a day-to-day basis, depending on how I was feeling. I've always been a very busy person so I never had time to spend on special diets. I did figure out that I couldn't eat close to bedtime. That would almost always keep me from sleeping well.
The medications and knowledge are so much better today than 30 years ago. Mostly just keep up with your scopes so that if a problem develops you'll know about it sooner rather than later. Good luck with all this.
Aww that is just brilliant news 
) so happy for you!!! Make sure you spoil yourself to celebrate, such a worrying time!!!