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 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. Please note that while most stories end on a positive note, others reveal insights into the very difficult roads 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.

Rajpreet, Supporter

Name: Ranjpreet Supporter: Father has oesophageal Neuroendocrine Cancer. Ranjpreet's Story: 💬 My father has been diagnosed with NET of the oesophagus which is rare and I’ve not heard or read much...

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Kevin, Patient

Name: Kevin Age: 53 Neuroendocrine Cancer Site: Small Intestine / Liver Kevin's Story: I was diagnosed in early 2021 with primary NET in my small intestine and secondary in my liver after initially...

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Maxine, Patient

Name: Maxine Neuroendocrine Cancer Site: Small Bowel NOT THE LIFE WE PLANNED …. It was October 2015, and as I lay on the CT scanner bed, suddenly the inconsequential, friendly chatter in the room...

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Allison, Patient

Name: Allison Age: 41 Neuroendocrine Cancer Site: Primary - Pancreas with Lymph Node spread Allison's Story: In 2018, at the age of 38, I was diagnosed with a grade 1 pancreatic neuroendocrine...

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Sophie, Patient

Name: Sophie Age: 52 Neuroendocrine Cancer Site: Glucagonoma - pancreas (primary), paraaortic retroperitoneal lymph nodes (secondary). Sophie's Story: When is a rash not a rash? My NET story...

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Deborah, Patient

Name: Deborah Age: 60 Neuroendocrine Cancer Site: Primary to small bowel. Metastasis to liver.   Deborah's story: I was diagnosed in February 2016 with small bowel Neuroendocrine Cancer with...

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Barbara, Patient

Name: Barbara Age: 58 Neuroendocrine Cancer Site: Lung Barbara's story: November 2019 I was offered a lung screening as part of a so called SUMMIT study at UCL hospital in London. I used to be a...

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Sarah, Patient

Name: Sarah Age: 42 Neuroendocrine Cancer Site: MINEN in colon Sarah's Story: I was feeling pretty tired in 2019, but with three young kids I didn’t know too many people who weren’t. When I stopped...

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Donna, Patient

Name: Donna Age: 57 Neuroendocrine Cancer Site(s): Primary lung, metastasis to the liver Donna's Story: I was diagnosed April 2019 after feeling really unwell for some time and initially being...

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Lisa, Patient

Name: Lisa Age: 51 Neuroendocrine Cancer site(s): Primary is unknown and metastasis to the Liver. Lisa's Story: Hi, my name is Lisa. I married to Stu and have a wonderful son Adam who is 19 years...

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Maxine, Patient

I’m Maxine Patterson and seventy-four years old. I was a deputy headteacher, but my first love was teaching English. I really enjoyed the connection with young people and helping them begin their...

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