My uncle had this on his pancreas. What i remember is, but don't take it word for word, depending on the symptoms, they can sometimes pinpoint it. By that i mean, lower GI NETs can cause flushing and loo issues, lung nets can cause wheezing, pancratic ones can cause loo issues and stomach pain and so on. How are you with tomatoes etc? I know a lot of people with NETs struggle with those. Those are indicative of lower GI NETs too. Lower GI ones sometimes take a period of time before they show up.

An Octreotide Scan is usually used if nothing is being picked up on CT's etc. That uses tracers that attach to the hormones. I'm assuming the urine test was the 24 hour one?

So I’ve not really had any symptoms other than the flushing which has now strangely stopped. I have had wheezing for about 2 years but put it down to asthma. I’ve not really had any toilet issues other than some blood but had a colonoscopy and nothing was seen. They’ve done an octreotide scan but I’m quite unclear if they did or didn’t see anything. All I got was asked to book a chest CT scan following it. Then the dr cancelled it so they could discuss me at a team meeting and the outcome of that was to have the CT scan after all and now I’m waiting to have that next week. And waiting to see what the 2nd 24 hour urine test says. 1st one said level was 225 and 40 and under is meant to be normal. I would think the urine test was a mistake other than I generally feel unwell and now also have this visible lump in my neck. It’s all a little confusing and worrying. I emailed the NHS drs secretary to ask if I can have a face to face consultation to ask questions but I never get a straight answer. Thank you so much for replying :) 

Hi Kymblee did you get any answers?  

Hi, I eventually had a consultation with an NHS dr and the conclusion was because they could not locate a tumour and the 2nd urine test came back normal that I do not have neuroendocrine cancer after all. I stopped taking a medicine called nifipidene shortly after and the flushing went away. It was a rollercoaster as private drs originally told me it wasn’t a case of IF I had it it was a case of I definitely had it and they had to keep looking until they located the tumour and then all of a sudden the search was called off. 

Thank you for responding. I’m currently being tested and it’s very scary.  I’m flushing daily along with other symptoms.  I feel even getting to full diagnosis will be an uphill battle x

Have you had the 24 hour urine test? Make sure to avoid avocados and bananas and tomato’s before the test as they can elevate the level. I wasn’t told that beforehand. 

I had the symptoms about 18 months ago and everything was negative.  Now they are daily symptoms I’ve paid to see a private consultant and he has done that test along with some others.  The GP won’t entertain any discussion and tells me it’s anxiety. Feel annoyed that I’m being dismissed and have to pay. Just adds to the worry x

Get the private dr to do the urine test and if it comes back positive the NHS should be able to put you forward for the occeteride scan under the 2 week cancer pathway if you want to save money. But at least with private you can push for the tests that you want and get results slightly faster sometimes. I think the scan is probably the best way to find out if it is neuroendocrine tumours. I had a endoscopy and colonoscopy and they weren’t exactly pleasant experiences and nicer if you can avoid them if you don’t need to have them. Hope it goes smoothly for you. Try not to worry it may be something much less sinister as it turned out to be with me. it is quite a rare cancer to have. I understand your frustration though GP didn’t even know what it was or how to test for it!! X 

Thank you so much for responding. I really do appreciate it. I didn’t know a positive urine would trigger the 2 week pathway. That is somewhat reassuring xx