Is the anxiety of the diagnosis of Barrett's Oesophagus worse than the reality of the prognosis?
Diagnosed with a condition they’ve never heard of, patients turn to the internet where they will find scare stories, particularly in regard to the possible progression to cancer.
The following are just a handful of the hundreds of comments posted from Fearful Newly Diagnosed (FND) patients diagnosed with Barrett's Oesophagus.
"I was diagnosed back in February and I was absolutely devastated. I have had lots of things going on at the same time, but this diagnoses put me over the edge."
"I was.diagnosed with Barrett's a few months ago ... scared out of my mind"
"I was diagnosed with Barrett’s esophagus about 9 days ago. ... I am petrified"
"I have just been diagnosed with BE. How can l stop it turning into Cancer? I'm scared"
"I have been a crying mess since diagnosis. I am petrified that this will progress into cancer"
"I was terrified when I started reading everything on line it makes it sound like a death sentence."
"I'm not gonna lie, I'm scared"
It does have to be stressed, although there is an increased risk of cancer, for those identified as having Barrett’s the risk is very low particularly as they will receive medication that probably reduces those risks (see this page) and regular surveillance scoping would detect pre-cancerous changes early enough to be successfully treated.
From some recently published papers:
"Patients with Barrett's esophagus overestimate their risk of developing esophageal adenocarcinoma and will accept low success rates and high risk of complications to undergo endoscopic therapy. " [c-vii]
"greater emphasis on patient-centered communication strategies during conversations about Barrett's esophagus and cancer risk may be helpful for reducing patients' psychological distress" [c-viii]
"After you tell a patient that they have Barrett's and that only a very small minority develop cancer, just stop. Stop and acknowledge that you said a very scary word, 'cancer.'" [c-ix]
"Evidence is mounting that disease labels affect people’s psychological responses and their decisions about management options" [c-x]
"Using loaded labels such as “cancer” can make patients more worried ... which can cause them to choose more aggressive management options—with more risk of harm." [c-xi]