Living with
neuroendocrine cancer
Support for everyday life, wellbeing and relationships
Living with neuroendocrine cancer can affect many areas of your life. As well as managing your cancer and its treatment, you may experience changes to your physical and emotional wellbeing, relationships, family life and everyday routines.
Everyone’s experience is different, and the things that matter to you may change over time. Finding ways to manage symptoms, look after your wellbeing and talk to the people around you can help you adapt to life with neuroendocrine cancer.
This page provides information and practical guidance on living with neuroendocrine cancer, including managing symptoms and treatment, emotional wellbeing, relationships and intimacy, and talking to family and children. It also explains where you can find further information and support.
Use the links in the box to find the information that is most relevant to you.
Quality of life with neuroendocrine cancer
Living with neuroendocrine cancer is often described as living with, rather than beyond, cancer.
‘Living well’ means different things to different people. What matters most is what quality of life means to you. Many things can influence this, including:
- Your physical health: this includes the type and stage of your cancer, whether you have symptoms, if you’re having treatment or regular check-ups, and any other health conditions you may have.
- Your emotional and mental wellbeing: your thoughts, feelings, sense of identity and how you cope or receive support all play an important role.
- Your relationships and social life: family, friends, colleagues and others around you can affect how you live with neuroendocrine cancer. These relationships are often closely connected to your practical and emotional needs.
Understanding the difference between NET and NEC
For those diagnosed with neuroendocrine carcinoma (NEC), the experience may be more similar to that of other cancers, with care often delivered through general (primary site specific) oncology services and a more ‘traditional’ cancer pathway followed.
For many people with neuroendocrine tumours (NETs), however, the journey can be different. NETs are often best managed within specialist neuroendocrine centres, where expert teams have specific experience in these complex and rare conditions.
Living with NETs is frequently described as an ‘acute on chronic’ experience – a long-term condition that may remain stable for periods of time but can also change or become unpredictable.
Not sure what NET and NEC mean?
For those with NET: Understanding an ‘acute on chronic’ condition
This means managing two things at once:
- Chronic phase: a longer term, often stable condition, managed with ongoing treatment and monitoring
- Acute phase: periods where symptoms suddenly worsen or new complications occur, requiring more immediate attention
This can include:
- Sudden increases in pain
- Hormonal symptoms or changes
- Fatigue or infections
- Digestive or bowel issues
Managing this balance is about maintaining stability while responding quickly to change.
Core elements of care and management
Your care may involve:
- Multidisciplinary support: a team of specialists working together to guide your treatment and ongoing care
- Holistic needs assessment: a checklist to help identify what matters most to you and align care to your needs
- Symptom management: managing symptoms related to the cancer, its hormonal effects, and treatments
- Early palliative care: focused on improving quality of life at any stage
- Advanced care planning: talking about your goals and preferences
Living day to day
Managing physical symptoms
- Fatigue
- Pain or discomfort
- Hormone-related effects
- Digestive or nutritional challenges
Always let your healthcare team know about changes – support is available.
Diet and nutrition
Nutrition can be complex with neuroendocrine cancer due to:
- Tumour type and location
- Hormone production
- Treatment side effects
- Changes in digestion or absorption
There is no one-size-fits-all diet.
Reliable, evidence-based advice is essential. You can find out more on our Diet and nutrition page (coming soon).
Surveillance and scans
Not all neuroendocrine cancers require immediate treatment – and there may be periods of time in-between or after treatment that surveillance is part of your care plan.
Surveillance means:
- Regular scans and tests
- Monitoring symptoms
- Ongoing discussions
This is an active, planned approach to avoid unnecessary treatment while keeping you safe.
Scanxiety: Managing worry around scans
You may hear the term ‘scanxiety’, which describes the anxiety, worry or fear some people feel before, during or while waiting for results.
This may include:
- A racing heart or difficulty sleeping
- Feeling tense or overwhelmed
- Nausea or appetite changes
- Difficulty concentrating
These reactions are completely understandable.
Ways to help manage scanxiety
Know what to expect
- Ask when and how results will be shared
- Understanding timelines can help reduce uncertainty
Focus on what you can control
- Plan your journey
- Bring comforting items
- Practise relaxation techniques
Watch our video: Coping with Cancer – Focus & Grounding Exercise for dealing with Anxiety
Communicate your needs
Speak to your healthcare team
Medication support may be available if needed
While waiting:
- Stay connected
- Keep a gentle routine
- Limit information overload
Reminder: You are not alone – many people experience this.
Emotional wellbeing
Living with cancer can feel like being on a rollercoaster of emotions. You may experience:
- Anxiety or uncertainty
- Low mood or depression
- Frustration
- Changes in identity or confidence
It’s important to know:
- These feelings are common
- They may change over time
- There is no ‘right’ way to feel
It’s OK to not be OK sometimes.
Emotions, feelings and moods are natural tools that help us process what is happening – but if they become overwhelming, support can help.
Emotional and practical support
Support is available in a range of ways. You can access it in your own time, in your own way.
Find out about support that is available to youChanges in relationships
It is common for relationships to change after a cancer diagnosis. You may feel a sense of loss for how things used to be, or for the future you had imagined.
A diagnosis can sometimes put strain on relationships – but it can also bring people closer together. Family life and partnerships may feel like a rollercoaster at times, with ups and downs as everyone adjusts.
Often, these changes improve over time as you and those around you adapt.
Getting support
If you are finding things difficult, it can really help to talk to someone you trust. This could be:
- A friend or family member
- A counsellor or therapist
- A member of your religious or cultural community
- A healthcare or social care professional
You can decide who you talk to and when – there is no right or wrong way.
Helpful tips for talking to others
- Be honest about your needs: share both practical and emotional needs where you feel comfortable.
- Accept support: if someone offers help, it’s okay to say yes.
- Be patient with differences: people may react or cope in ways you might not expect. This is normal.
- Be kind to and honest with yourself: you don’t owe your story to anyone but sometimes sharing how you feel with someone you trust can help both of you to cope.
Talking to a partner and maintaining relationships
Many couples experience changes in their relationship when one person has cancer. These can include changes in roles and responsibilities, intimacy, parenting, and plans for the future.
It is common for one or both of you to feel a range of emotions, such as guilt, anger or resentment, about how cancer has affected your life together. These feelings are normal and do not mean your relationship is failing.
Common concerns you or your partner may worry about:
- How best to support each other
- How to communicate openly
- New or unexpected feelings
- Making decisions together
- Managing multiple responsibilities (such as work, childcare and caregiving)
- Changes in daily routines and social life
- Feeling less connected emotionally or sexually
Talking honestly about how cancer and its treatment affect both of you can help strengthen understanding and connection.
Talking about your diagnosis, or what’s happened since, can feel overwhelming. There is no single ‘right way’, but these tips may help:
- Choose the right time and place to talk: find a comfortable space for you both, where you won’t be interrupted.
- Take it at your own pace: you do not need to talk about everything at once. It is okay to have several shorter conversations.
- Prepare if it helps: writing down key thoughts or worries beforehand may make it easier to start.
- Be honest and clear: explain what you know about your diagnosis, or what may have happened since, while allowing space for reactions.
- Acknowledge each other’s feelings.
- Avoid feeling you must ‘stay strong’: it can feel almost instinctive to want to try to protect each other but hiding feelings can lead to distance. It is okay to share fear, sadness, or anger.
- Talk about practical support: discuss what might help, such as attending appointments, swapping round chores at home or simply listening.
- Keep to normal routines, as much as possible: everyday activities and shared time can provide comfort and stability.
- Make space for non-cancer time: doing things you enjoy together can help maintain your connection.
- Seek support if needed: counsellors, support groups, or healthcare professionals can provide a safe space to talk.
Intimacy and sexual relationships
Intimacy is an important part of many relationships. It includes touch, closeness, communication and feeling cared for – not just sex.
Cancer and its treatment can affect how you feel about your body and your relationship, which may change how you experience intimacy.
Things to be aware of:
- You or your partner may feel unsure about physical closeness
- There may be concerns about causing pain or discomfort
- Desire or confidence may change
- Time without intimacy may make it harder to restart
These changes are common and often improve with time and communication.
Talking about intimacy
- Listen to each other: make space for both partners to share feelings and concerns.
- Be honest about needs and boundaries: talk about what feels comfortable, what has changed, and what might help.
- Take things slowly: intimacy does not have to mean sex — it can start with small, reassuring gestures like holding hands or sitting close.
- Focus on comfort and consent: mutual understanding and agreement are key to maintaining a healthy relationship.
Practical considerations during treatment if you are sexually active
- You may be advised to use barrier protection (such as condoms or dental dams) during treatment
This can help:
- Prevent pregnancy – where treatment may harm the foetus.
- Reduce the risk of irritation from treatment-related substances in bodily fluids
- Lower the risk of infection, especially if your immune system is weakened
If advice is unclear or not discussed, speak to your healthcare team for guidance.
Remember, relationships often go through changes over time, and perhaps especially during cancer. While this can be challenging, open communication, patience and support can help you and your partner adjust together.
If you are struggling, reaching out for help is a positive and important step.
Talking with work colleagues and employers
Work can be an important part of daily life, providing structure, purpose and social connection.
A cancer diagnosis may affect how, when, or whether you work, and you may need to have conversations with your employer or colleagues.
You are in control of who you tell and how much you share.
Common concerns you may worry about:
- Whether or when to tell your employer or colleagues
- How your diagnosis might affect your job
- Managing work alongside treatment or fatigue
- Changes to your role or responsibilities
- How others at work might react
- Financial or job security
Talking to your employer or HR: A note about your rights
- In the UK, you are not legally required to tell your employer about a cancer diagnosis
- However, if you do tell them, you are protected under the Equality Act 2010 (or Disability Discrimination Act in Northern Ireland)
- Cancer is legally classed as a disability, meaning your employer must not discriminate against you
Reasonable adjustments: once your employer is aware, they have a duty to support you through reasonable adjustments, which may include:
- Flexible or reduced working hours
- Time off for appointments or treatment
- Working from home
- Adjusting duties or workload
- Providing additional support or equipment
How to approach the conversation
- Arrange a private meeting to speak with your manager or HR in a confidential setting.
- Take support if needed: you can bring a trusted colleague, friend or Trade Union representative.
- Share what feels right for you: you do not need to give full medical details — focusing on how your health may affect your work is enough.
- Talk about what might help: discuss any adjustments that would support you to stay in or return to work.
Talking to colleagues
Colleagues may be people you just see at work, people who are part of your social network or close personal/family friends.
- But talking to them about your health is your choice: you decide if, when, and what to tell colleagues.
- You can control what is shared: you can ask your employer to keep your information confidential or agree how information is communicated.
- It can help to plan how to share information: some people prefer to tell colleagues themselves, while others ask a manager to do this.
- Be prepared for different reactions: colleagues may not always know the right thing to say. This can sometimes feel awkward, but is often not intentional.
Remember:
- You are not required to tell your employer, but sharing can help you access support
- You are legally protected from discrimination
- You can choose what to say, and when
- Support is available to help you stay in or return to work
Managing work and wellbeing
- Take things at your own pace: your ability to work may change during treatment or afterwards.
- Keep communication open: regular updates with your employer can help manage expectations.
- Focus on what matters to you: work may remain important, or your priorities may change – both are valid.
Practical support and resources
- Occupational health: your employer may refer you for specialist advice on working safely and comfortably.
- Access to work scheme: a UK government programme that can provide practical and financial support for staying in work.
- Specialist support services: organisations such as Macmillan Cancer Support or Maggie’s Centres offer information and guidance about work and cancer – for both employers and employees.
Talking to children
Talking to children about cancer can feel difficult. Many parents and carers worry about saying the ‘wrong thing’ or causing distress. However, children are often aware that something has changed.
Being honest, clear and age-appropriate can help them feel more secure and supported. You do not have to get everything right – what matters most is being open and available.
Common concerns you may be worried about:
- How much to tell your child
- How to explain cancer in a way they understand
- How your child will react emotionally
- Changes to family routines or roles
- How to balance protecting your child while being honest
- How to support them while managing your own feelings
Children may also have worries they do not always share, including fear about what will happen, changes at home, or feeling responsible in some way.
Listen to our podcast: Neuroendocrine cancer what children seeTalking about cancer and setting up the conversation
- Choose a calm, safe moment: pick a time when you are unlikely to be interrupted.
- Think about what you want to say: it can help to plan a few simple words or phrases.
- Be ready for more than one conversation: children often need information repeated and may ask questions over time.
- Be honest and clear: use simple, age-appropriate language. For example, explain that cancer is an illness where some cells in the body are not working properly.
Reassure them, making it clear that:
- They did not cause the cancer
- Cancer is not something they can ‘catch’
- They will continue to be cared for and supported
- Allow emotions, but also maintain behaviour boundaries: children may react in different ways – some may ask lots of questions, others may say very little.
- Listen and check understanding: ask what they have understood and if they have any questions.
Age-specific approaches
For younger children (under 10):
- Explain things in a literal, straightforward way, using words and examples they can relate to
- Repeat information when needed
- Reassure them about routines and care
For teenagers:
- Be more open and detailed
- Acknowledge uncertainty and challenges
- Encourage them to talk and express feelings in their own way
Supporting children over time
- Keep routines where possible: familiar routines help children feel safe.
- Maintain boundaries and expectations: usual rules and structure can provide reassurance.
- Work with school or carers: teachers can offer additional support and a sense of normality.
- Recognise different responses: some children may become upset or withdrawn, while others may seem unaffected. All responses are valid.
- Make time for connection: spending time together, even in small ways, can be reassuring.
When it feels difficult
If you are finding it hard to talk or support your child:
- Seek help from a healthcare professional, counsellor or support service
- Look for specialist resources designed to help families talk about cancer
- Remember that asking for support is a positive step
Remember:
- Children usually cope better when they are included and informed
- Honest, age-appropriate conversations build trust and security
- You do not have to have all the answers – being present matters most
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