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If you have been diagnosed with neuroendocrine cancer                      Your experience could help improve neuroendocrine cancer diagnosis

We have launched a new survey to better understand patients' experiences of the journey to diagnosis, from first symptoms through to receiving a neuroendocrine cancer diagnosis.  

Whether your diagnosis was reached quickly or followed months or years of uncertainty, your experiences can help identify barriers to earlier diagnosis and improve support, awareness, education and care for future patients.  

Every person's experience provides valuable insight into the realities of living with neuroendocrine cancer. 

By participating in this survey, you will help us better understand the challenges patients face today and identify areas where greater awareness, education and support are needed. The findings will be used to inform future advocacy work, support services, research initiatives, healthcare education and policy development. 

All responses will be anonymous, so you can share your experiences openly and honestly. 

CLICK HERE to take part in the patient survey

If you are a family member or carer ​​​                                                             Your experience matters; improving support for families, friends and caregivers

We have also launched a survey to better understand the experiences, challenges and support needs of those who have cared for or supported someone living with neuroendocrine cancer.  

Whether you provided emotional support, practical help, advocacy or personal care, your insights can help shape future services, education, research and policy.  

For more information on how to take part, please visit our website.

Support & Wellbeing 

Try one of our popular Group Therapy Programmes

Living with neuroendocrine cancer can affect many areas of life, including physical health, emotional wellbeing, relationships, work, and confidence about the future. For many people, especially those living with a rare cancer, feelings of isolation and loneliness can be one of the greatest challenges. 

Research shows that professionally facilitated group support can help reduce feelings of isolation and anxiety, improve coping skills, strengthen resilience, and provide valuable emotional and practical support. Many people tell us that meeting others who understand their experience helps them feel reassured, supported, and more confident in managing life with cancer. 

At Neuroendocrine Cancer UK, our FREE online group therapy programmes, run by specialist mental health and wellbeing provider Rareminds, are designed to help people live well with neuroendocrine cancer, providing opportunities to connect, learn, and build long-term wellbeing. 

“I can recommend the family and carers one, I did it a couple of years ago and found it really good” 

“I did the mindfulness course. Definitely worthwhile.” 

It's easy to register:

1. Visit www.neuroendocrinecancer.org.uk/supporting-you/counselling/
2. Find a programme you're interested in.
3. Complete the online Expression of Interest/Application form.
4. A member of the Rareminds team will contact you to discuss the programme and answer any questions before confirming your place.

So why not take a look and see if one of the programmes might be right for you.

Support Groups: more than just a meeting

Neuroendocrine cancer can sometimes feel like a lonely diagnosis, but nobody should have to navigate it alone. Through shared experiences, compassionate listening, practical knowledge and genuine understanding, peer support helps people find connection, confidence and hope. 

The message we hear time and again from those attending our groups is simple: meeting others who understand makes a difference: "I wish I had found the group sooner."  

We are delighted to see our community come together and our support groups grow, with 8 groups started, re-started or starting in 2026: 

Local in-person: Amersham, Birmingham, Coventry, Exeter, Hastings and North Wales 

Online: Aberdeen, Highlands & Islands, and Kent 

For NCUK, patient support groups are not simply meetings. They are communities built on understanding, compassion and shared experience. They help people navigate diagnosis, treatment, survivorship, loss and everything in between. 

That is why Neuroendocrine Cancer UK remains committed to supporting and coordinating patient support groups across the UK, ensuring that everyone affected by neuroendocrine cancer has the opportunity to connect with others, find support and know they belong. 

Find out more or contact the NCUK Support Team here. 

Research & education 

Research study: Share your experience of nutrition and physical activity during cancer treatment

We are delighted to support a new research study being led by the NIHR Cancer and Nutrition Collaboration and the University of Southampton, which aims to better understand patients' experiences of receiving information about nutrition and physical activity during cancer treatment. 

The research team is seeking feedback from adults who have received cancer treatment in the UK within the last five years. Through an anonymous online survey, participants will be asked about the information, advice and support they received regarding nutrition and physical activity, as well as what additional information may have been helpful during their treatment journey. 

The findings will help improve the quality of information and support provided to future cancer patients across the NHS and other healthcare settings.  

The survey takes approximately 15 to 20 minutes to complete, and all responses are anonymous. Participation is entirely voluntary. 

If you have received cancer treatment since January 2021, were treated within the NHS, are aged 18 or over, and can complete the survey in English, your experiences could make a valuable contribution to this important work. 

This study has been approved by the University of Southampton Research Ethics Committee (Reference: 110081). 

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