Supporting the

Neuroendocrine Cancer Community

Just diagnosed… 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.

In this section you will find information about:

Select play to watch video.

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.

Everyone’s unique

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. Neuroendocrine 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.

    Straight talking…

    …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.

    Remember that you’re not alone

    The Neuroendocrine Cancer UK helpline is a free and confidential phone service for people living and affected by Neuroendocrine Cancer. If you need to talk, we’ll listen. 

    Get in touch.

    Select play to watch Ambassador, Maria talk about being newly diagnosed with Neuroendocrine Cancer.

    Getting Access to the Right Care

    If you’re diagnosed with a Neuroendocrine Cancer, a specialist, accredited, “NET” specific Multi-Disciplinary Team (”NET” MDT) should review your case on an ongoing basis.

    In this guide we list the current experts, clinics and Centres of Excellence and information about getting a referral to one of these centres. You can also find guidance on ways in which to be best prepared, including speaking with your doctor, and useful questions to ask at your appointments.

    Select the button below to download and print our useful questions for your appointments printout.

    Select play to watch

    This video was recorded as part of the Neuroendocrine Cancer UK Virtual Summit 2020.

    Support

    Being diagnosed with cancer can throw our thoughts and emotions into chaos. It’s completely natural to experience a whole range of different feelings – often at the same time – and trying to work out how you feel, or think you should feel, can be distressing.

    One thing that’s certain is that there’s no right way of reacting to the news that you have cancer. But it can help to try to identify and name the emotions you’re feeling.

    Just as with physical health, where identifying the symptom and cause can help treatment – in emotional health, identifying the feeling and why you feel that way can help in dealing with it.

    Most thoughts and feelings are helpful, but some can become harmful and may negatively affect our decision-making and quality of life.

    For further support, download our ‘When you are first diagnosed’ leaflet.

    How we can help you

    We provide expert information and support for everyone affected by Neuroendocrine Cancer and we’re here for you at every step.

    Select the image to learn more.

    How we can help you

    We have a variety of services to help support you, every step of the way.

    Speak to a member of our team

    Call our dedicated Neuroendocrine Cancer helpline and speak to one of our friendly members of the team.

    Connect with others

    Join one our support groups, find a support buddy, or simply reading blogs about others’ experiences. 

    Counselling

    We offer a free, confidential service for patients and supporters, family members or friends.

    Living with Neuroendocrine Cancer

    Living with Neuroendocrine Cancer has been described as like being on a rollercoaster. So there may well be times when things aren’t easy, that’s why we have created a page help you deal with those times. We focus on some of the challenges you might face including:

    and ideas that can help you to deal with them.

    We’ll talk about the reality of living with Neuroendocrine Cancer and offer some practical tips that may help, including information about:

    Where would you like to visit next?

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    Symptoms

    Tests

    Homepage

    Treatments

    Your cancer site

    What is Neuroendocrine Cancer?

    Living with Neuroendocrine Cancer

    How we can support you

    NC research and our campaign work

    End of life care