Neuroendocrine/carcinoid cancer

HI there Cmfrosty16, just to confirm you have a small intestine NET, got slightly confused about the 'camera down' and nodule - so is the primary in your stomach or your small intestine?  

Please also note that if you've been on acid reflux tablets called proton pump inhibitors for a while, this might elevate a blood test called Chromogranin A (they normally always do that for NETs). Lansoprazole or emoseprazole are examples.  Mention that to your consultant

Hi thank you I read that somewhere so will definitely mention it! I've been on omeprozole for years so hopefully they'll take that into account when they get the results. 

All I know so far is that they've found this nodule in the top of my small intestine they said its a carnoid tumour and is cancer, not sure if that's the primary one but I think so unless there's any more discovered down the track.

Still waiting for him to phone, really getting impatient! 

Just keen to get everything moving asap! 

Ah - that puts a totally different light on it. Sounds like a duodenal NET - technically that is part of the small intestine - the very first bit.  It comes from the base of the stomach and then it surrounds the head of the pancreas. They always pop the scope through the end of the stomach and into that part.  Combined with your acid reflux problem, it could be a Gastrinoma but they will confirm.  They sometimes group these with pancreatic NETs due to the geography.  

In terms of tests, I'm guessing they have given you a Chromogranin A (which be elevated by the drugs you've been on) and I also suspect they have taken Gastrin due to your symptoms. If I was the doctor, I would also have given a "fasting gut hormone profile" due to the tumour location.  This is a group of hormone tests that try to discover any increased levels of particular hormones which would point to the exact type of NET plus its functionality.  

I know what you mean about moving but NETs can be complex and ducks need to be in a line before launching into treatment plans.  

Ronny

Thank you for your reply.

On my notes it says the nodularity seen anterior to the duodenal bulb? Not sure what that means. Don't know if it means one or more than one but the consultant only pointed out one.

I've had the blood test for the chromogranin and a 24 hr urine test to check for hormone levels or something. Not really sure what's going on.

Still not heard from the consultant, apparantly he is waiting on the report from the meeting. Actually can't believe I've not heard a thing. I think it's the consultants registrar I've been dealing with but no idea what he's called so can't chase him!

Just really thought I'd have heard something,  I know things take time but he should have had the results by now and the meeting must have taken place for him to be waiting on the report. Maybe I need to try be more patient. 

Did you have a carcinoid? 

The duodenal bulb is most likely the part of the duodenum which looks like a C surrounding the head of the pancreas.  Anterior is the 'front', as opposed to the posterior which means at the back.

I never use the word 'Carcinoid' as it's 18 years out of date.  I have a SI NET but in the place where most SI NETs are found - in the terminal ileum - the complete opposite end of the small intestine to yours!  Click on my profile - you can find out a lot about me there.  

You'll here from them shortly I guess

I’m sure they are waiting for the written report from the MDT as they would want to be sure of their facts before talking to you. This is my mantra xx

As I said before the waiting is the worst bit....thinking of you xx

Thanks will definitely have a look! 

I finally heard from him , typical I was in the school playground picking my kids up so had to run off and couldn't take it all in properly! But basically they had the meeting and a CT scan has been ordered and I've been referred to The Christies and  another team meeting will take place. They'll decide if a PET scan is needed. 

Still don't know my test results but he said they were ordered just to confirm everything and didn't need to worry too much about them. Easier said than done! 

So now just waiting for appointments! Still not really any the wiser! Need to speak to him again really or go and see him.

I really wanna know the stage and grade of it and don't know how they find that out! I thought the biopsies originally taken might have determined that.

So pleased you heard from him and really  good news they have referred you to The Christie one of the best Centres.

I expect the MDT will have reviewed all your results but need the CT to exclude anything else. I think I had every scan available, CT, MRI, PET, Gallium 68. 

I’m not sure your Consultant would be able tell you much more at the moment. The stage and grade is determined by spread which is what the scans will tell them. I have to say I didn’t have to wait too long for my appointment at Royal Free so fingers crossed you won’t too.

netpatientfoundation.org have a really good Facebook Page NET Natter UK Online, lots who attend Christies, so when you feel ready, that could be another source of support 

One day at a time

x

Grade is determined by biopsy 

Maybe they are still doing tests on that then? It was from the biopsies they found it was cancer he said. I should have asked, wish I had