Supporting the

Neuroendocrine Cancer Community

Faces of NCUK

Be part of a like-minded community where you can share your own thoughts and feelings about Neuroendocrine Cancer.

Around 36,000 people are affected by Neuroendocrine Cancer (NETs) in the UK, with over 5,000 people newly diagnosed each year. That is more than 13 people a day. For many the first time they will have heard about Neuroendocrine Cancer will be the day they receive their diagnosis.

Faces of NCUK is here for you to be part of a huge community of like minded people, and to share your own thoughts and feelings about Neuroendocrine Cancer. Whoever you are – a Neuroendocrine Cancer patient, a supporter, a friend, healthcare professional or a loved one – you have the power to take action and make your voice count.

 

By talking about your experiences, you can help us tell powerful stories that raise awareness and create a wider and deeper conversation about Neuroendocrine Cancer across the UK. People who’ve shared their story often find it a really positive experience and an opportunity to make a real difference for people living with Neuroendocrine Cancer, and their families.

Whether you are living with Neuroendocrine Cancer, or supporting a loved one who has been diagnosed, we’d love to hear from you.

How can you get involved?

All you need to do at this stage is click on the ‘Share your story’ button below and answer some questions, giving us as much information as you can and feel comfortable with. If we need more details, a member of the Stories team will get in touch to have a chat.

Thank you.

 

The stories here have been shared by Neuroendocrine Cancer patients, supporters, healthcare professionals and friends and colleagues of NCUK. We will constantly update this page, so please be sure to visit it again.

For some this has been the first time they have written about their experience and where they are now. Patients share their experiences of how they became ill, their treatment, and their road to recovery. Supporters and Healthcare professionals share their experiences. Some stories end on a positive note, but some paint a picture of the difficult road that many Neuroendocrine Cancer patients face.

Please note that the stories and opinions posted in the Faces 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.

Martin, Patient

Martin, Patient

Hi I’m Martin, 57 years old, long-term Pancreatic Neuroendocrine patient. I guess all good stories need to have a good beginning. I can probably trace the start of my relationship with...

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Christina, Patient

Christina, Patient

PURSUING A PARAGANGLIOMA Looking back now, all the pieces fit together. However, at the time it was entirely a different story. Initially, I noticed a distinct whooshing sound in my left ear. But I...

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Donna, Patient

Donna, Patient

Name: Donna Age: 56 Neuroendocrine Cancer site(s): Primary = bowel and Secondary = liver Donna's Story: I'm a mum of 2 grown up children who I'm incredibly proud of. I work in the catering industry...

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Janet, Patient

Janet, Patient

My name is Janet, I am 66 years young and have been diagnosed with NET’s in my bowel, liver and pancreas, after lots of tests and scans in 2020, I finally got diagnosed October 2020 and started on...

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Jane, Patient

Jane, Patient

LIKE BEING HIT BY A BASEBALL BAT I was so shocked when I was diagnosed with a Neuroendocrine Tumour at Stoke Hospital in June 2020. I called it a ‘baseball bat’ moment. One of those life changing...

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Olivia Williams, Patient

Olivia Williams, Patient

It was June 2018, I was in LA filming season 2 of the TV show Counterpart, pretending to be in need of life-saving surgery, pretending to have something very important to say, and not being able to...

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Tony Attwood, Patient

Tony Attwood, Patient

My name is Tony Attwood. I was diagnosed with Neuroendocrine cancer following abdominal surgery in January 2000. In those days it was called carcinoid cancer. After being under the consultant...

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Rodney Vowler, Patient

Rodney Vowler, Patient

It took 13 years to get a diagnosis. My life saver was being diagnosed as being coeliac. That did not go right, so a camera was put into my stomach. Showed a tumour in the ilium. Full body scan it...

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Liz, Lead Nurse, Royal Free Hospital

Liz, Lead Nurse, Royal Free Hospital

I am Liz Quaglia and I am the lead nurse for the NET team at the Royal free Hospital. We are a large NET unit and work with a growing number of NET patients of all kinds... I joined the team 10...

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Marion, NCUK Trustee

Marion, NCUK Trustee

I became a Trustee of the then NET Patient Foundation (now Neuroendocrine Cancer UK) in 2012 because I was keen to support this charity which was a great help to me following my diagnosis of a...

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Peter, NCUK Trustee

Peter, NCUK Trustee

Peter helped found the patient support group, ‘Living with Carcinoid’, with his late wife Liddy in 2000. Liddy (Oldroyd) was an outgoing and successful TV comedy director and was eventually...

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Martin, Patient

Martin, Patient

  Hello, my name is Martin Brown, I am 55 years old, married to Wendy and we have 2 daughters, Emma (27) and Lauren (25), and a blind old Jack Russell, Stella, and Reggie the cat. In January...

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About Us

Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.

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