Worried about Zollinger-Ellison (gastrinoma)
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Hi there!
I've posted on this forum before with my symptoms. I'm now a little further along in my journey to discovering what is wrong with me, and as certain scary things are being eliminated, I'm getting more and more worried about NET cancer (gastrinoma or Zollinger-Ellison syndrome). I'm hoping someone with the same symptoms had a better diagnosis than this, as it's scaring the hell out of me.
My symptoms:
June 2020: sudden heartburn / burning sensation esophagus all day and all night, no matter what I ate. Never had heartburn before in my life, so very odd. Also got a pain under my left rib. Also constant.
July 2020: H pylori test negative, put on pantoprazole for 4 weeks. This helped slightly. Came off pantoprazole and all symptoms returned.
August 2020: Went for private MRI because super anxious about symptoms: nothing unusual except for gallstones.
September 2020: begged doctor to refer me for endoscopy. She said she wanted to send me to surgeon to have gallbladder removed, as that must be it. I refused and asked for referral. She agreed.
October 2020: endoscopy: found nothing. After endoscopy I went back on ppi because pain was unbearable. Constant burning in chest, all day, and pain in stomach.
November 2020: went for ultrasound because I was so worried about cancer. Again: nothing found.
December 2020: went to GI doctor (finally) and he referred me for a 24h ph monitoring. I'm getting the results on Friday, but I'm so worried the results again will be: nothing found.
On the one hand I'd love for it to be 'functional dyspepsia'. On the other hand I've been reading a bit too much Dr Google and found stories of ZES, where it's hard to find anything wrong at first, and patients are often misdiagnosed with functional dyspepsia. Does anyone have any encouraging words? Could this just be anxiety? Or something functional?
0 likes, 1 reply
anne53212 nicola27252
Posted
It could just be too much acid from maybe even a virus that set it off. You are very lucky you've had a normal endoscopy! I think if it was Zollinger syndrome they would have found the cancer through all your tests already right? I dont know a lot about that syndrome though. Keep us updated on your new results.....