Gluten Free Guerrillas
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World Cancer Day - Support iCancer & NETs

World Cancer Day - Support iCancer & NETs

Hi Guerrillas,

It's World Cancer Today and we wanted to promote a Cancer that is close to our heart as a family member has it. It's a little known Cancer called NETs (doesn't sound that nasty at all does it?). But the full name stands for Neuro Endochrine Tumour.

What are NETs?

Neuroendocrine Tumours (NETs) are fairly uncommon and are usually slow growing cancers. You might hear them referred to as GEP NETs, because they often arise in the cells of the stomach (gastro), intestines (entero) and the pancreas (pancreatic). You'll probably remember Steve Jobs* of Apple died of Cancer - well what wasn't reported widely was it was a NET Cancer.

"Between 3-5 people per 100,000 are diagnosed with new cases of NETs each year in the UK. However because NETs can grow slowly and in some people produce such minor symptoms, doctors believe that there are probably thousands of people living their lives with NETs, but unaware."

It can be common for NETs to be found by accident during tests or treatments for other conditions, such as irritable bowel syndrome, crohns disease, peptic ulcer disease, gastritis or gallstones. Many of you in this forum will have had these tests on the path to diagnosis for Coeliac Disease so it pays to be aware of NETs and to ask your Doctor about it both to raise awareness and to ensure that any unusual symptoms you have are discussed.

Why should you read on?

Well this Cancer is very rare but like Coeliac Disease it's often under diagnosed or missed completely meaning many people suffer and die from it. Diagnosed early there are forms of management and treatment as NETs are slow growing tumours. In addition NETs are more common in people with other auto-immune diseases most commonly if you are unlucky enough to have both Thyroid Disease, Pernicious Anemia, and Auto-Immune Atrophic Gastritis together.

Normally Doctors are taught the saying 'If you hear hooves clopping along look for a Horse not a Zebra'. Normally sage advice. However, sometimes the 'horse' is actually a Zebra and a diagnosis of NETs is missed. So we'd love to raise awareness of this Cancer amongst our forum here and via your friends and family.

Simple Actions you can take in 10 minutes flat!

1) So we'd love you to take 5 minutes to read the common symptoms here:

2) Request a GP Awareness pack & pass this on when you next visit your hospital or GP Doctor

Just post a comment or email to the contacts here:

3) Watch this video from iCancer about their crowdsourcing campaign & spread the word before Valentine's Day - let's see if we can help raise their funds

You can also follow these organisations on social media:


Want to know more? Useful links below...but don't scare yourself - NET Cancers are rare, slow growing and can be treated if caught early. However, it pays to be aware of symptoms to help raise awareness amongst your personal circle and amongst the medical profession who aren't always aware of the symptoms to look for as this is a specialist area.


2 Replies

Hi Fiona and firstly I'd like to say how sorry that I am that one of your family has this.

Now several things here interested me, like the connection with CD and the endocrine system (glands) as how many coeliac have thyroid issues and on they did this really interesting article about coeliac and the adrenal glands and I wonder how many coeliac can relate to the symptoms of adrenal gland malfunction, so here a link and it's short easy to read article and has a list of symptoms that occur time and time again in coeliac circles, please see:

I was also very interested to read how they treat NET tumours, like using a heated needle or a chilled needle or if the tumour is in the liver to inject the tumour with neat alcohol to kill the tumour, as I was not aware of treatments like this.

The other thing that would interest me is how your family member was diagnosed as this is such a diverse and rare condition.

Lastly I hope that they are responding well to treatment for it and I wish them well.


Hi Jerry

Thanks for the link interesting reading.

Yes there's lots about adrenal malfunction and Coeliac. Luckily most people find this settles down on a GF diet although it can take some time.

The family member was diagnosed through luck and perseverance. After seeing a gastro for years and being told they had IBS they were referred to an Endochrinologist who discovered that they actually had Pernicious Anemia. Which in turn led the Gastro to consider more endoscopies due to ongoing stomach problems. This located atrophic auto-immune gastritis. Luckily the relative explained to the endoscopy Dr the reason for the test i.e. Pernicious Anemia related & checking on cells in the bowel. At which point they said 'oh we better test for something else as well'. One of their biopsies came back abnormal. So luckily they were referred to a Gastro Prof. who just happened to be the European expert on NETs. It was caught early at stage one and now means it is monitored by yearly endoscopies, blood tests and check ups. So another example of why it pays to speak up and explain your full history at hospital as you never know when someone may put 2+2 together and come up with 4.


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