NET

Hi everyone,

This is my first post, i have my own investigations going on but a really good friend of mine has just been diagnosed with a NET with liver mets, i want to be the best support to him that i can and i wanted to post here to speak to anyone going through this so i can be a better practical and emotional support to him, thanks in advacnce everyone!

 

  • Hello Sunflowers20

    I'm sorry to hear that your friend has been diganosed with NETS. We do have one member here [@andydorro1]‍ who has been living with NETS for many years. 
    I've tagged him into my reply here so he may pop along to say Hello! and share his experience with you. 

    You might find it helpful to have a look at the Neuroendocrine Cancer UK website which I've linked for you here

    I hope this helps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Hi,

    I was diagnosed with stage 4 pancreatic cancer which had spread to my liver at the end of 2018. Initially I was told I had months left, at best. After more tests I was told it was NETs and although it was inoperable and incurable it was at least much slower than 'normal' pancreatic cancer and I could have years left. Nearly three and a half years on and I'm still here, living a relatively normal life, although it's a different normal. It's a scary thing to deal with, especially waiting for results from scans etc and that gets worse as time goes on. Don't read too much online, it's not always up to date, and everyone is different so what you read might not apply to your friend. Just be there for them, and let them talk, or rant and shout if they need to. Just because there is no cure now doesn't mean there won't be next month or next year, there's always hope. But just in case make the most of now. Besides, none of us know when we're going, I was told three to ten years when they told me it was NETs, which compared to months sounds great (still pretty crap though as I intended to live to 120). But just because they told me that, doesn't mean I can't get hit by a bus tomorrow. Your friend will probably have highs and lows, the early days really are a rollercoaster, but it evens out and it is possible to live with it, they just might have to make a few changes in life. Fingers crossed for you both 

    Mac.