My uncle suffered from this, but he was obviously a lot older than your son. Not sure if it's still a thing, but there used to be a NETs specific website, with its own forum. But I'm kinda sure it closed down, and they moved all their members and discussion to Facebook. NET's is so rare it's kinda its own thing. What i will say, and something that is slightly more positive in a lot of cases, it tends not to follow normal PC outlooks. What i mean by that, they tend to be slower growing, so the PC stats you see out there, tend not to be applied to NET PC cancers. My uncle received a drug (the name escapes me, but maybe began with the letter "L") and it slowed things right down to the point he lived for years with it.

But yeah, and no disrespect to these forums or website, but imo, you're better served with a NETs specific group that will give you a better idea on what to expect as it's a very specific tumour type. Some people live for years with it, whilst that's not usually the case with normal PC.

My uncle suffered from this, but he was obviously a lot older than your son. Not sure if it's still a thing, but there used to be a NETs specific website, with its own forum. But I'm kinda sure it closed down, and they moved all their members and discussion to Facebook. NET's is so rare it's kinda its own thing. What i will say, and something that is slightly more positive in a lot of cases, it tends not to follow normal PC outlooks. What i mean by that, they tend to be slower growing, so the PC stats you see out there, tend not to be applied to NET PC cancers. My uncle received a drug (the name escapes me, but maybe began with the letter "L") and it slowed things right down to the point he lived for years with it.

But yeah, and no disrespect to these forums or website, but imo, you're better served with a NETs specific group that will give you a better idea on what to expect as it's a very specific tumour type. Some people live for years with it, whilst that's not usually the case with normal PC.

Here's the name of the charity

Neuroendocrine Cancer UK

There's also https://www.pancreaticcancer.org.uk/ Who have specialised nurses you can all, but again, i don't think they deal much with NET cancers.

Thank you I will check that group out.