We’re here for you.
We cannot tell you that we know how you feel right now or how you may feel as time goes by…
The main thing to try and remember at this stage is that you really aren’t alone. It’s easy to feel isolated when you find out you have an uncommon condition, but getting the correct diagnosis means you should now have access to the right expert care team who understand your condition and can help.
We hope that many of the questions you may have are answered on this website, but don’t be afraid to ask your care team anything that isn’t – or to give us a call. There really is no such thing as a stupid question – what is important is that you have information you can understand.
LETTING IT ALL SINK IN
You are still you
A NET/NEC diagnosis shouldn’t define who you are. It will change your life and may make you feel very different, or uncertain – but you will always be much more than your diagnosis.
Your illness is as individual as you are. Whilst you may meet others with a similar type, location and grading – you may have different experiences, treatments and responses. So while it can be hugely helpful to meet with people in a similar situation and share your experiences, try not to compare yourself too much with anyone else.
Incurable and terminal are not the same thing
Incurable means a condition can’t be cured. Terminal means it can reasonably be expected to end a person’s life in a limited amount of time. Neuroendcorne Cancer is often incurable but certainly not always terminal.
Treatment doesn’t happen to you
It happens with you. You have every right to be involved in every stage of your treatment, so ask questions, take time to make decisions and don’t say yes to anything unless you’re absolutely sure you understand what’s planned, and are in agreement with that plan.
…can be anything but straightforward, however letting those closest to you know how you are feeling, and what’s going on, can be very empowering – for you, and helpful for them. Living with Neuroendocrine Cancer is at times unpredictable, but hiding the emotions that uncertainty causes, doesn’t really make them go away. Being honest with yourself, as well as loved ones – is a first step in learning to handle difficult emotions.
Many people find our support groups and Facebook groups a helpful way to talk with others, in similar situations, others who really understand what being diagnosed and living with Neuroendocrine Cancer means.
But please know that we are here for you, and your loved ones, to listen, answer questions, provide information and support, here to help you in dealing with your diagnosis of Neuroendocrine Cancer and what might happen next.
NCUK exists to support patients and their loved ones with the physical and psychological burden of Neuroendocrine Cancers.
Whether you want to know every detail of what a Neuroendocrine Cancer can mean or would rather your care team just got on with it, there’s a lot to be said for being prepared.