Hello ZollingerGirl and welcome to the forum.

If you've starting noticing new symptoms whilst waiting for your tests do be sure to let your consultant know so they can keep track of this.

Although this is quite rare, I will have my fingers crossed you'll hear back from others in a similar situation soon and that you're not waiting too long to find out more about your situation.

All the best,

Steph, Cancer Chat Moderator

Thanks Steph :happy:

Hi - I feel the same. Why and how did you get to this conclusion? Also , how did your tests come out? Did you measure your gastrin levels?

Hi PhoenixReborn,

Sorry to hear you have similar symptoms. I had my gastrin levels tested by a hunch my gastroenterologist had as he couldn't find the reason for my symptoms (watery stools when stopping omeprazole). This confirmed I had a gastrinoma. Normally they retest a second time but I was admitted to a&e with a stomach bleed as soon as I continued off omeprazole. 

The original CT scan did not show any tumours but I had MRI and PET scans which confirmed a stage 2 neuroendocrine tumour (gastrinoma) in my pancreas. I've since had major abdominal surgery to have it/half my pancreas/spleen and local lymph nodes removed.

It's all pretty rare hence my reaching out here, so anything I can do to help! How far along a journey to diagnosis are you? Checking gastrin isn't normally something considered so bring it up with your doctor if you are concerned x

Yes, the chance of getting this is very tiny. I'm still doing tests, not yet gastrin. How long did it take for your gp to do the test since you had the first symptom? Also, how long did you had to be off ppi's for the test? 

I'm very sorry you had to go through that surgery but glad they were able to remove the lesions. How are you holding up?

Im 36. That's the thing with ZES, starts when young. Also wanted to ask you if they genetically did the MEN1 test for you?

Hi PhoenixReborn,

Sorry I didn't see this message from a while back. How are you getting on?

Sadly I've had symptoms for years and always been passed off as it being something else. I then got all tests done privately only last year when I tried to come off PPIs again. I've had issues for 6 or so years. To test the gastrin I was off Omeprazole for 2 weeks. They were then due to retest after being off for 4 weeks but I was hospitalised with a stomach bleed and that pretty much confirmed something else going on.

Re MEN1 genetic testing I've been referred but there is a lot of confusion around who can actually do it so the referral has been sat and I chase every couple of weeks again!

Xx