Supporting the

Neuroendocrine Cancer Community

NEUROENDOCRINE CANCER

STORIES & EXPERIENCES

Faces & Voices of NCUK

Each year in the UK , around 6,000 people are diagnosed with a Neuroendocrine Cancer – and the incidence is rising with ” Latest research suggest an age standardized incidence of above 9 per 100,000 in a study using UK cancer registry data ” (White et al 2020). 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.

Our ‘Faces & Voices of NCUK’ campaign – provides 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.

Being diagnosed with cancer is challenging – both physically and mentally. Being diagnosed with a rare/less common cancer can have additional consequences, not least in terms of limited awareness, knowledge, access to early diagnosis and expertise. It can be hard not to feel isolated, afraid, anxious and / or uncertain.

We launched the ‘Faces & Voices of NCUK’ campaign to bring people together – to combat that sense of isolation, help address those difficult feelings and allow space for uncertainty to be talked about. Sometimes there aren’t always answers – but through shared experiences and stories we can, sometimes, find one. . .or two.

Below you can browse various blogs and journals. View photos and read, or watch stories shared by Neuroendocrine Cancer patients, supporters, friends, healthcare professionals and loved ones.

Please note that the stories and opinions posted in the Faces of NCUK and Voices of NCUK are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.

Supporter, Lucy has written a song for her Dad.

Faces of NCUK

Patients share their experiences of how they became ill, their treatment, and their road to recovery. Supporters and Healthcare professionals also share their experiences of supporting someone with Neuroendocrine Cancer.

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.

Voices of NCUK

Browse various blogs and social pages – read journals, view photos, listen to podcasts or watch videos of those sharing their personal story, experience and knowledge.

Find out how advocates are raising vital funds but most importantly raising awareness of Neuroendocrine Cancer – and all to support you… and to make a difference.

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.

FACES OF NCUK

Pete, patient and fundraiser

Name: Pete Neuroendocrine Cancer Site: Pancreas with liver mets. I am cycling from North to South Devon in April 2022 to raise awareness of neuroendocrine cancer and funds for the very special...

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Judy, Patient

Name: Judy Age: 69 Neuroendocrine Cancer site: Small Bowel and metastasis to the Liver Judy's Story: I was first diagnosed with Neuroendocrine Cancer in 2019 which came as a shock, as I had just...

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Paul

Name: Paul Age: 55 Neuroendocrine Cancer Site: Pancreas Paul's story: I was struggling with various tummy issues and upper abdomen problems throughout 2017 and 2018. I was backwards and forwards to...

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Sally

Name: Sally Neuroendocrine Cancer Site: Caecum Sally's Story: After feeling so tired and struggling with hot flushes for many years, I went to see my doctor. I virtually collapsed on his desk. So we...

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Debra

Debra (51). Diagnosed February 2021 Rare Rectal Primary with Liver Mets I recall visiting my GP in 2015. I felt increasingly tired and lethargic with joint pains, as well as recurring cramps in my...

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Christina, Nurse Clinician

My name is Christina Nuttall and I'm one of the Nurse Clinicians at The Christie NHS Foundation Trust, Manchester. I have worked as a nurse clinician covering upper gastrointestinal (UGI),...

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VOICES OF NCUK

Fix my broken heart, by Craig

My Name is Craig Speirs, I’m 41 years old, married to my beautiful wife Angela and I have two children, Adam aged five and Rhianne aged thirteen. I've been living with Neuroendocrine Cancer for over...

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Guilty as Charged, by Kath

A cancer diagnosis is a lot to get your mind round. It brings a whole new set of complexities to try to understand. Whilst at the same time, trying not to dwell too much on the fact that things can...

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PRRT, the Truth, by Barrie Dack

Asked if you would like to go on a clinical trial for PRRT (Peptide Receptor Radionuclide Therapy) and the immediate reaction is “what on earth is that” and “how dangerous is it”? The title is...

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Living with Watch & Wait, by Kath

A Long Time … Watching and Waiting I received my diagnosis of ‘Watch and Wait’ in June 2015, following surgery to try to remove a growth that had been found in my small intestine. The growth...

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BLOGS

Peter’s vlog

As a hobby, I had been making short videos for my YouTube channel sharing my love of health, fitness, and the outdoors. However, I was diagnosed with a primary neuroendocrine tumour of my small...

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Fighting Cancer with George

Aged 24, diagnosed with Neuroendocrine Cancer of the Pancreas. You can follow George's journey and check out the amazing support that he has received from many celebrities and sporting legends on...

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Beauty & the Big C by Laura Anderson

Irish Gilmore Girl. Aged 33. Neuroendocrine Cancer patient. Incurable but treatable? Trying to take control and learn about healing my body for better quality of life and survive. Click here to...

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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.