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: netpatientfoundation.org/20...
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.