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

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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That Fraudulent Feeling…

That Fraudulent Feeling…

That Fraudulent Feeling … The last time I put pen to paper was November 2021 when I wrote a blog about my decision to take early retirement from a job I loved - because of a cancer I certainly...

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But Debra, you look so well …

But Debra, you look so well …

But Debra, you look so well … Some of you will recall that I was diagnosed with Neuroendocrine Cancer in February 2021, with a primary site in my rectum and metastases to my liver. This is an update...

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Stable: So, is that it?

Stable: So, is that it?

For six years my life with Neuroendocrine Cancer has had a rhythm that has enabled me to live a positive and organised life. Last month, that changed for me. And that change rocked my confidence. My...

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Travelling – Be Prepared: Kath Lewis

Travelling – Be Prepared: Kath Lewis

On the whole, travel should be fairly easy in everyday life, with the odd curveball thrown in here and there…. Happens to us all.  I am not talking about just nipping out, but about going out for...

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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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What is Neuroendocrine Cancer?

Living with Neuroendocrine Cancer

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NC research and our campaign work

End of life care