Just diagnosed with
neuroendocrine cancer?
Information and support to help you navigate the early days after diagnosis
Being diagnosed with neuroendocrine cancer can bring a lot of new information, questions and decisions. There is no ‘right’ way to respond, and you do not need to understand everything or make sense of it all at once.
At Neuroendocrine Cancer UK, we are here to provide clear, trustworthy information and practical guidance, as well as support when you need it.
This page is a starting point for the early days after diagnosis. It includes practical tips for preparing for appointments and talking with your healthcare team, questions you may want to ask, and information about emotional wellbeing and ways to find support. You can also find resources to help you learn more about your diagnosis and what may happen next.
Take things at your own pace and focus on the information that feels most useful to you right now.
First things first – your feelings are both valid and normal
There is no ‘right’ way to react to a cancer diagnosis. You might feel:
- Shock, disbelief or denial
- Fear or anxiety about the future
- Anger or a sense of unfairness
- Relief at finally having an explanation for symptoms
- Overwhelmed by information
These reactions are completely normal and may change from day to day. It can help to remember:
- Emotions are your body’s natural response
- Feelings develop as you begin to process them
- Moods can shift over time
Giving yourself time to adjust is an important first step.
Taking things one step at a time
In the early days, it can feel like there is a lot to take in. It’s okay to:
- Take things slowly
- Ask questions more than once
- Focus on what you need to know right now
You may find it helpful to:
- Write down questions as they arise
- Take someone with you to appointments
- Keep a simple record of information and contacts
You are the most important person in your care team, and understanding things at your own pace can help you feel more confident and in control.
Questions you may wish to ask
You may find it helpful to ask questions during your appointments.
We provide a simple list of example questions as a guide – but it is entirely up to you to ask what feels important. There are no ‘right’ or ‘wrong’ questions.
You might want to ask about:
- Your diagnosis and what it means
- Tests, scans or next steps
- Treatment options and possible side effects
- Who to contact if you have questions
- What support is available to you and your family
Helpful tools and top tips
Download our question prompt sheets and guides to help you prepare.
- You could write your questions down before your appointment and bring them with you.
- If you want someone with you, then bring them along.
- If you have a phone with a record function – ask if you can record the conversation.
It’s your care, your journey – your questions matter.
Working with your healthcare team
You will be supported by a team of healthcare professionals (a multidisciplinary team, MDT) who work together to plan and deliver your care.
They will:
- Review tests and scans
- Recommend treatment options
- Provide ongoing care and monitoring
Good communication is key. You should feel able to:
- Ask for explanations in simpler terms or formats (e.g. an information booklet)
- Share concerns or new symptoms
- Talk openly about how you are feeling
Remember: You are at the centre of your care, and your voice matters.
Emotional wellbeing and support
A diagnosis doesn’t just affect your physical health, it can also impact how you think and feel.
Support is available in different ways, and you can access it in a way that feels right for you, at your own pace.
Counselling support
We offer a free, confidential counselling service for patients, family members and carers.
Our counsellors have a specialist understanding of the challenges of living with neuroendocrine cancer, providing a safe space to talk openly.
Find out about our counselling support
Group therapy programmes
Our group sessions provide a safe and supportive space to:
- Share experiences
- Explore common challenges
- Discuss coping strategies
- Learn practical tools and resources
You can take part in a way that feels comfortable for you.
Find out about our group therapy programmes
Mindfulness course
We offer a mindfulness course to support your wellbeing.
Mindfulness helps you stay in the present moment, rather than becoming overwhelmed by worry or negative thoughts. Regular practice may help:
- Reduce stress
- Manage pain
- Support overall wellbeing
A note of caution
If you have an existing mental health condition or are currently in crisis, please speak with your doctor or mental health team before starting mindfulness practice.
Find out about our mindfulness course
Patient support groups
Peer support groups are a vital part of cancer care, offering emotional, practical and shared understanding.
Our groups can help you:
- Feel less alone
- Share experiences
- Gain confidence navigating your care
We offer a range of online and in-person groups, led by trained staff or facilitators, where you can talk, listen or simply connect.
Our groups are open to those with neuroendocrine cancer and their loved ones.
Find out about our patient support groups
Additional support
Our helpline is open Tuesday – Thursday, 10am – 4pm.
Find out more about our helpline
Other useful resources:
Remember: Reaching out is a positive step – and you can do it in your own time.
Finding ways to cope
Everyone copes differently. It’s about finding what works for you.
You might try:
- Breaking things into smaller steps
- Keeping routines where possible
- Staying connected with others
- Accessing trusted information
Further resources
Watch our video: Just Diagnosed – What Happens Next:
You can download your Newly Diagnosed booklet.
It is also available to order in hard copy here.
Your next steps
When you feel ready, you may want to:
- Learn more about your condition
- Explore treatment options with your team
- Access support services and community networks
A gentle reminder
- It is early days — adjusting takes time
- You are not expected to have all the answers
- Support is available when you need it
We are here to support you every step of the way.
Find out more about support that is available to you
On this page
We’re here to help. Please call.
Our dedicated neuroendocrine cancer helpline provides general neuroendocrine cancer information and peer support.
Contact us