Just been diagnosed with Barrett's Esophagus and I'm scared
Posted , 17 users are following.
Hi all, sorry if this is a long post but I am just after some advice.
I am a 33 year old male who has had problems with heartburn and reflux for a while. I have also had Helicobacter Pylori a few years ago which was successfully treated.
My father had Barrett's Oesophagus and, unfortunately, has recently been diagnosed with terminal oesophageal cancer which has metastisised to his lungs and liver so things aren't looking too good for him. As I said, he was diagnosed with Barretts years ago. However, the last endoscopy he got was 10+ years ago, in which they said no follow up was necessary. Obviously it was, given the circumstances he is now in and we are in the process of investigating why he wasn't having regular endoscopies.
Anyway, this obviously worried me and gave the kick up the backside that I needed to go to the doctor about my own symptoms.
Given the symptoms and family history I was referred for an endscopy which I am just back from.
Immediatedly after the endoscopy, they gave me a report which says Barrett's was found in my oesophagus.
This is what the report says:
"Report: The procedure was completed successfully to D2.
Apparent mucosal junction at 38cm from the incisors.
Oesophagus - circumfrential Barrett's epithelium from 37cm to 38cm within (a) [there is a diagram here of the esophagus with (a) being at the lower end of it where it meets the stomach]
Diagnosis: Oesophagus - Barrett's mucosa
Stomach - Normal
Duodenum - Normal
Specimens taken: Biopsy (x4)
Follow up: Awaiting pathology results
Advice/comments: Await lower oesophageal biopsies"
To say that I'm scared is an understatement. I understand that I don't have cancer but it's all I can think about given what my father is going through just now.
Also, from the report, it's my understanding that the apparent mucosal junction, ie. The junction between my stomach and lower oesophagus, is 38cm from my incisors. Therefore, I have a 1cm ring of circumfrential Barrett's epithelium above this? Am I understanding this correctly?
Also, is this bad in terms of Barretts Oesophagus?
I'm just scared stiff. Watching what my dad is going through just now is heart breaking and I don't want to have to go through it myself. I am only 33 with a 5 year old daughter and now all I can think of is cancer, cancer, cancer.
Please can anyone out there help me or give me any advice. Many thanks.
0 likes, 17 replies
Barretts pjwilson83
Posted
Hi,
You read your report correctly. It appears you have 1 cm of Barrett's (but it does need confirmation from pathology) . It will probably show o dysplasia.
I understand your concern.
About 1 person in 70 has Barrett's but only 1 in 100 know.
Barrett's is a permanent change of cells to protect our bodies from frequent acid attack. For most of us it will not cause a problem (I have had my 3 cm for at east 22 yeasrs) . However, for a very small number of people, it has the ability to mutate to cancer. The advice is to take PPI mdication (eg omeprazole) daly for life. It has been shown it probably has a chemo-protective effect with a 71% lower risk of cancerous progression.
At the same time it is important you receive regular surveillance scoping every few years. (The attached graphic shows the BSG recommended guidance. ) This is particulalrly important for you as there has been shown to be a genetic element to possible progression. It is criminal your father didn't receive more frequent scoping or he wouldn't be in the situation he now finds himself. I hope his condition is being managed as wel as they can.
If you are scoped regularly, pre-cancerous changes (dysplasia) should be seen early enough to treat to prevent it becoming cancerous.
pjwilson83 Barretts
Posted
Thanks for the reply Barretts, it has made me feel better.
I think I'm just freaking out because of everything that is happening with my dad. I agree with you, it is criminal he didn't get a scope in over 10 years but that's another matter....
Can I just ask, you said that my biopsies will probably show no dysplasia - what makes you say that? Is it because my area of Barrett's is only 1cm? Is that considered small?
Sorry for all the questions, I'm just trying to get my head around it all.
PS - I had a look at your Barrett's Wessex website - it's very helpful.
Barretts pjwilson83
Posted
1cm is a small segment. Unless you have had Barrett's a long time, you'll probably not have dysplasia. Most diagnosed with Barrett's won't have dysplasia. If, however, dysplasia is found, have it ablated,
ihavenonickname pjwilson83
Posted
Dear PJ,
I hear your stress...slow your breathing.
Yes, 37 cm is above 38 cm.
First, wait for the biopsy results. No one can take further action without the results. Taking your daughter out and perhaps teaching her to skip or hop scotch will help divert your thinking.
I am so sorry to hear of your dad's ordeal...I will hold him up in my prayer.
Universities are great places to go for medical because they are up to date on cutting edge research. If you must travel, ask if they have any lodging agreements with the community. This can save you some dollars.
My first impression is that the endoscopic exam followed guidlines by noting measurements and taking biopsies.
If the biopsies show a return of H Pylori, antibiotic is in order.
Whether or not you would require a deeper endoscope depends on the biopsy results.
I hear how very difficult this is. You can do this. Just breath. The waiting is the most difficult part. I will watch for your postings.
Kind regards,
judith
pjwilson83 ihavenonickname
Posted
Paul
s11288 pjwilson83
Posted
Hi, I was diagnosed with this last week, after years of telling my GP that it wasn't normal that I was having severe heartburn, reflux & vomiting. I'm really annoyed because it took so long for them to refer me to a gastro clinic. When I had a endoscopy they initially said I had IBS, but after the specimens/biopsy taken it was Barretts and gall stones. But they didn't even tell me. After they gave me the medication, it had written on the top 'Barretts disease: Long Term.' I knew what it was as I had researched it previously when my GP said it wasn't that. The gastro doctor only explained when I asked him to do.
The experience left me terrified. I rang up the Macmillian Cancer Support helpline & they were able to put my mind at rest that Barretts rarely becomes cancerous with regular endscopies & checks with your gastro clinic.
I think the best thing you can do is try to eat foods that are less likey to cause heartburn. Lose a bit of weight if you are slightly overweight, follow an exercise programme or a excercise/relaxation programme such as yoga. I find this helps, although I kind of know what foods cause my heartburn. You need to cut out stuff through trial & error. If you smoke, try to give up & if you drink alcohol, cut back.
Also try not to worry if you get a severe heartburn moment occasionally. I had one the other day (the first time in ages) and was so nervous that it was a sign it had got worse. I was back on the phone to Macmillans & they said it is rare that one or two occasional bouts of severe heartburn despite taking medication would make things worse.
I hope you start to feel a bit better about it all. I'm trying to think of Baretts as a way to get a bit fitter and I'm hoping it will all help. Good luck
alexm73595 pjwilson83
Posted
Hello, I to have just been diagnosed with Barrett's. I'm 58 and I survived prostate cancer 10 years ago. Now I have this to worry about. For years I've had heart burn and acid reflux. There were times that the first bite of any meal was hard to swallow. I told my general practioner and he gave me a prescription for a PPI and it helped. well recently I was having some lower GI problems and he recommended I have a colonoscopy and just to be sure an upper GI. Well to make a long story short the upper GI revealed Barrett's Esophagus and a Hiatal hernia which caused the acid reflux. The funny thing was that the colonoscopy came up negative. I've had nothing on mind since. Having been a cancer survivor before I can only think that I'm prone to this and I'm scared out of my mind that the pathology will reveal cancer cells. I know the odds are low but I've already beat the odds by developing Barrett's
ihavenonickname alexm73595
Posted
hugs...I understand. Indeed, it is so difficult to be free when one has had cancer once.
Twice for me. We have to get up and move forward with cheer and with hope. I do not yet have the results of my biopsies ..I have had the hiatal hernia for decades...I may now have Barrett's.
I am choosing to hold on to "early makes a big difference"
We are all here for each other. We cry, we celebrate, we cheer, we push, we share, we question, we are a team...together everyone achieves more..
barb62913 pjwilson83
Posted
I understand your worry! I was diagnosed six years ago at age 54. One year later on re-exam another physician did not notice any Barrett's so scheduled next endo at five years. Well it's almost time for re-exam and if I hear of a celebrity who died of esphop cancer (as I did last night) I start dwelling on the 'what ifs' and obsessively spend too much time looking on the Internet! And I was very diligent about diet that first year but not so much since. I worry perhaps that extra 10 pounds will be the cause of bad test results! Or the fact for one year I raised the head of my bed but since only sleep on a special GERD wedge pillow without raised bed. So you see, there are others that totally understand the worry part of Barrett's. If there is anyone who can share reassuring words, it would be appreciated!
Kid_Barret barb62913
Posted
amy66984 barb62913
Posted
gwen45436 amy66984
Posted
Hi, I have HH/Esoph/Gerd/Silent reflux - so do worry of the outcome.
I take my meds and avoid certain foods.
There is an ex footballer's wife called Lizzie Cundy who has ulcers and Barrets - read her story on line, it give loads of hope - she does not let it interfere with her life.
nina_17 pjwilson83
Posted
I was diagnosed with Barret's 2 years ago and read a report that strawberries can help. I started eating strawberries plus freeze dried strawberry powder every day. I also take half a teaspoon of turmeric and black pepper every day. Last week my endoscopy showed that I am now free from Barret's . It has gone. It worked for me.
darrius48093 nina_17
Posted
Nina, so your Barrett's is gone? What great news, what did you take the turmeric and black pepper with? I always thought spices like (black pepper) triggers the Gerd (acid reflux). Please enlighten me some more on the strawberry remedy, thanks.
nina_17 darrius48093
Posted
I heard about the strawberries in the book " how not to die" by Dr Michael Greger. As much strawberries and strawberry powder every day. Usually take a teaspoon of turmeric plus black pepper sprinkled in soup or any food. It doesn't have a strong taste. Hope this helps
gwen45436 darrius48093
Posted
I have watched a YouTube vid on this guy who cleared his Barretts using strawberries every day in smoothies. It is confusing because with reflux/gerd we are told not to eat strawberries due to their acidity and also black pepper should not be in anything and an irritant. I know someone with gastritis and she got rid of it and eat something with "hidden" black pepper in it and was back to square one.
I think if I progress into BE I would try strawberries in a smoothie though and add turmeric.