Supporting the

Neuroendocrine Cancer Community

Stories and Experiences

Welcome to our ‘Not Just NE Cancer’ stories and experiences page. This is a safe space for those who wish to share their story and a place for anyone affected by neuroendocrine cancer to access real-life experiences and advice from those who have experienced it first-hand.

Overall though, of all the ‘gifts’ neuroendocrine cancer has brought into my life, the one I hold closest is the fellowship of those who like me, fight this battle every day – both other patients with Neuroendocrine Cancer and the staff at Neuroendocrine Cancer UK.  Like me, they endure the many gifts given by this chronic cancer, whilst also giving the gifts of empathy, understanding, friendship, information, and support.

Bethann, Neuroendocrine Cancer patient and ambassador

Each year in the UK, around 6,000 people are diagnosed with a neuroendocrine cancer – and the incidence is rising. Despite this increase, in a recent survey of more than 200 people with neuroendocrine cancer, less than 5% had heard of it… until they were directly affected by it.

You may be one of those people who have never heard of neuroendocrine cancer… you may have been told it is rare. You may feel isolated and afraid.

Here you will learn that you are not alone.

Continue reading to browse and watch stories by neuroendocrine cancer patients, who have bravely shared their experiences of how they became ill, their treatment, and their road to recovery. Many of the stories offer support and handy hints and tips about topics such as; preparing for treatment, or how to care for a loved one with neuroendocrine cancer.

Select play to watch Neuroendocrine Cancer patient and Ambassador, Craig share his experiences.

Trigger warning
Please note that some stories end on a positive note, but some paint a picture of the difficult road that many neuroendocrine cancer patients face.

Disclaimer
The stories and opinions posted are those solely of the authors and contributors of the stories.
They do not reflect the opinions of Neuroendocrine Cancer UK.

STORIES AND EXPERIENCES

Compassion Fatigue, by Polly

Compassion Fatigue, by Polly

A ‘carer’s’ experience is not the same as a patient's. It can’t be. But the fallout from the stress and anxiety can be just as overwhelming. There have even been times when I’ve experienced both...

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My Lottery Win, By Gary

My Lottery Win, By Gary

Name: Gary Neuroendocrine Cancer Site: Small Bowel Neuroendocrine Tumours with Liver Metastases.  Hospital: Southampton General Hospital - - My name is Gary and I was diagnosed in March 2023 with...

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PRRT Funding: Michelle’s Story

PRRT Funding: Michelle’s Story

Name: Michelle Neuroendocrine Cancer Site: Primary: Adrenal gland with secondaries in lungs, liver, and lymph nodes behind the aorta - - Michelle's Story I have suffered for years with sweating,...

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Newly Diagnosed, by Marie

Newly Diagnosed, by Marie

Name: Marie Martin Neuroendocrine Cancer Site: Pancreatic Primary - I’d rather not be writing this story but it might help others - it's hard to find out anything straightforward about...

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My ‘Friend’, CAPTEM

My ‘Friend’, CAPTEM

Written by Cynthia, neuroendocrine cancer patient. Neuroendocrine cancer site: Pancreas. Hospital: The Christie, Manchester.   In June 2021, I was diagnosed with an 11cm tumour on the tail of...

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This is my husband, Andrew Cheetham 

This is my husband, Andrew Cheetham 

In memory of Andrew, written by his wife, Faye. - - I had known Andrew throughout my teenage years, he was very popular, especially with the girls. I knew him from afar, I was shy and quiet and...

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Decisions on Treatment Options, by Jane

Decisions on Treatment Options, by Jane

  Name: Jane Since my diagnosis seven years ago, after a long search for the reason for my pain, I have become a faithful diary writer, everything from what I eat - to see if it gives me an...

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From Diagnosis to YouTube, by Alan

From Diagnosis to YouTube, by Alan

Name: Alan Neuroendocrine Cancer Site: Pancreas   Alan's story I'm a father with two adult daughters, married to Kate since 1995.  I live in Cheshire with dogs, cats, hens, and a parrot! I...

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PODCASTS

Real life experiences, practical advice and everything in between. Whether you are diagnosed with Neuroendocrine Cancer or another rare or less common cancer, our podcast series cover topics from initial diagnosis, treatments and follow up, looking after your mental health and the professional perspectives from those involved in your care. 

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Symptoms

Tests

Newly diagnosed

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