End of
life matters.
Information and support for end-of-life care, planning and bereavement
You may be reading this page because you are living with advanced neuroendocrine cancer, caring for someone who is approaching the end of their life, or grieving someone who has died.
This page provides information about some of the questions, choices and support that may be important at this time.
It covers life expectancy and advanced disease, planning ahead and making decisions about your care, palliative and end-of-life care, and what to expect when someone is dying. There is also information and support for family and carers, including help with grief and bereavement.
You do not need to read everything at once. You can focus on the information that is relevant to you now and come back to other sections when, or if, you feel ready.
Neuroendocrine Cancer UK is also here to provide information and support when you need it.
If you are thinking about life expectancy
Many people living with neuroendocrine cancer worry about how long they might live. Life expectancy can vary widely and depends on things like:
- The type and stage of the cancer
- How fast it is growing
- Your overall health
- How well treatments are working
Only your healthcare team can give you information that is personal to you. It’s okay to ask questions, and it’s also okay if you don’t want to know everything right now.
Hearing that time may be limited can bring many emotions – shock, fear, sadness, relief or numbness. There is no ‘right’ way to feel.
Get in touch with us if you’d like support or help finding the right words to talk with your care team.
When treatment is no longer working
Sometimes neuroendocrine cancer continues to grow even with treatment. This is often called advanced disease.
When this happens, care usually changes focus from trying to control the cancer to managing symptoms and helping you live as comfortably and meaningfully as possible.
This can be hard to accept, but many people find relief when care becomes centred on comfort, dignity and their wishes.
Further resources
Watch our video: Advanced disease with neuroendocrine cancer – When treatment is no longer working
Planning ahead and making decisions
Advance care planning
Advance care planning helps you think about and record what matters to you if you become too unwell to speak for yourself.
An advance care plan can include:
- What treatments you would or would not want
- Where you would prefer to be cared for
- Who should speak for you if you can’t
You can change your plan at any time.
Further resources
Watch our video: Decision making in advanced illness
Order a notice of advance decision cardReSPECT
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment.
It is a personalised plan used by healthcare professionals in emergencies, based on your wishes and priorities.
You can visit the ReSPECT website for patients and carers.
Further resources
Watch our video: Because every moment matters: A personalised approach to end-of-life care
End-of-life and palliative care
End-of-life care focuses on comfort, dignity and quality of life.
Palliative care can be given at any stage of advanced illness and can help with:
- Pain and symptom control
- Emotional and psychological support
- Support for family and carers
Care can be provided:
- At home
- In hospital
- In a hospice
- In a care setting
Further resources
Watch our video: Because every moment matters: A personalised approach to end-of-life care
What happens when I die?
Many people feel afraid or anxious about dying. Wondering what will happen is completely natural. You don’t have to face these thoughts alone. Talking with your care team, loved ones, or a counsellor can really help.
Further resources
Watch our video: What Happens When I Die?
Books that many people find helpful:
- Listen: A powerful new book about life, death, relationships, mental health and how to talk about what matters – Kathryn Mannix
- With the End in Mind: How to Live and Die Well – Kathryn Mannix
Support for family and carers
When someone you love is dying
An end-of-life diagnosis affects everyone close to the person who is ill. You may feel helpless, frightened or unsure how to support them.
We can help with:
- Understanding medical information
- Coping emotionally
- Knowing what support is available
After someone has died: Grief and bereavement
Grief is a very personal experience. There is no timeline and no ‘right’ way to grieve.
We offer support for people who have lost someone to neuroendocrine cancer, including:
- A listening ear
- Counselling
- Help finding local support
Bereavement support
Neuroendocrine cancer bereavement:
General support and directories:
- Cruse Bereavement Support: offers free confidential support, including a national helpline (0808 808 1677), face-to-face sessions and local branches across England, Wales and Northern Ireland.
- The Good Grief Trust: acts as an umbrella network consolidating over 1,000 specialist charities and local services into a single searchable database.
- AtaLoss: a comprehensive signposting website that connects users with over 2,000 local and national services filtered by location and need.
- National Bereavement Service: provides free, impartial guidance (0800 024 6121) on practical, legal and emotional next steps after a death.
Specialised support organisations:
- The Loss Foundation: dedicated solely to supporting those bereaved by cancer through online groups and workshops (0300 200 4112).
- Child Bereavement UK: supports families when a baby or child dies, or when children are facing bereavement (Helpline: 0800 02 88840).
- Survivors of Bereavement by Suicide (SOBS): dedicated peer-led and emotional support for anyone affected by suicide (Helpline: 0300 111 5065).
Immediate crisis and NHS support:
- NHS 111/NHS Talking Therapies: free psychological support and self-referral for cognitive behavioural therapy (CBT).
- Samaritans: free, 24/7 listening service available by calling 116 123.
Neuroendocrine Cancer UK Remembers
Neuroendocrine Cancer UK Remembers is a safe, caring place to honour and remember someone who has died.
You can:
- Create a memorial page
- Share photos, stories and messages
- Connect with others who understand
- Donate in their memory if you wish
Create a memorial page
You can create a memorial page on the NCUK Remembers platform to honour your loved one.
Ways to remember and give
- Funeral collections
- One-off or monthly donations
- In-memory fundraising challenges
Every act of remembrance helps support people and families affected by neuroendocrine cancer.
We are here for you
This page covers a lot, and you may not be ready for all of it. That’s okay.
Whether you are living with advanced cancer, caring for someone you love, or grieving a loss, Neuroendocrine Cancer UK is here to support you with compassion, respect and understanding.
We’re here to help
This page covers a lot, and you may not be ready for all of it. That’s okay.
Whether you are living with advanced cancer, caring for someone you love, or grieving a loss, Neuroendocrine Cancer UK is here to support you with compassion, respect and understanding.
Other sources of support are available at RareMinds Wellbeing Hub.
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