Neuroendocrine Cancer UK

26/08/2025

📺 Missed Our Last Webinar? Watch Now!

Catch Prof. Sam Ford, Consultant Surgical Oncologist at Queen Elizabeth Hospital, Birmingham, as he delivers a detailed session on 'Surgical Management of Small Bowel Neuroendocrine Tumours (NETs) & Mesenteric Nodal Disease'.

👉 Watch on demand here: https://youtu.be/w5B1LCtV294

For more on the role of surgery in neuroendocrine cancer, visit our treatment page:
🌐 https://www.neuroendocrinecancer.org.uk/neuroendocrine-cancer/treatments/

Surgical Management of Small Bowel Neuroendocrine Tumours (NETs) & Mesenteric Nodal Disease | Sam FordJoin consultant surgical oncologist Prof. Sam Ford from...

26/08/2025

✨ Lots of face-to-face support groups are happening over the next couple of weeks, including a new group in Sheffield led by Prof. Newell-Price and Dr. Alia Munir.

💻 Don’t forget - our next Lung Support Group takes place online on 9th September!

👉 Learn more, find your local group, and register here: https://www.neuroendocrinecancer.org.uk/events/

22/08/2025

🎉 Fundraiser Friday 🎉
From football pitches to milestone birthdays and seaside 10Ks, this week’s fundraisers have shown the incredible power of community, friendship, and determination.

⚽ Steve - Walking Football Charity Tournament
Diagnosed with NETs 18 months ago, Steve wanted to raise awareness where he’d found so little. Partnering with Norwich Soca Seniors, the UK’s largest walking football charity tournament brought together 29 teams and hundreds of players, raising an amazing £3,000 for NCUK. With banners, T-shirts, and conversation, Steve turned sport into awareness.

🎂 Virginia 70th Birthday Fundraiser
Virginia marked her milestone birthday with family, friends, zebra decorations, and hampers filled with raffle prizes, raising £541.00 for our cause. She shared leaflets on every table to spread awareness and said, “Crikey, this being 70 business is exhausting!!” but her efforts will have a lasting impact.

🏃‍♀️ Porthcawl 10K – A brilliant team of friends laced up their trainers and ran the scenic seaside Porthcawl 10K in support of their friend Caroline, who is bravely facing NETs. Together they raised £1,643 and helped shine a light on this unknown cancer.

🌟 A heartfelt thank you to Steve, Virginia, and the Porthcawl 10K team - your energy and commitment bring awareness, hope, and vital support to our community.

20/08/2025

A lengthy and uncertain diagnosis journey can take its toll. The endless appointments, tests, and waiting can feel overwhelming - leaving people exhausted, anxious, and sometimes unheard.

But you are not alone. Many in our community have faced delays or misdiagnoses before reaching an answer. Sharing your experiences, finding support, and knowing that what you feel is valid can make all the difference.

💬 If you’re struggling, reach out to your helpline team, to loved ones, or our support groups. You deserve care, clarity, and compassion every step of the way.

👉 Explore our support services here: www.neuroendocrinecancer.org.uk

19/08/2025

💬 Everyone’s experience with pain and pain relief is different. You may have preferences based on past experiences, side effects, or expectations of care – and that’s okay. What matters most is that your voice is heard.

Pain is never “just pain” – it can be influenced by many factors such as fear, anxiety, fatigue, anaemia, hormone-related symptoms, or even lack of sleep.

💊 While pain-relieving medicines are often the first thing people expect, they may not always be the right or only option. Finding the approach that works for you is key.

🔹 Other approaches may include:
• Treating the underlying cause (e.g. constipation, vitamin deficiencies)
• Complementary therapies such as relaxation, acupuncture or mindfulness
• Gentle movement to ease bone and muscle pain
• Cancer treatments themselves, which can sometimes reduce pain

✨ Don’t feel you have to put up with pain: talk with your care team about how you would prefer to manage your pain when or as it occurs. ✨

🔗 Watch the full video from Dr Ros Taylor discussing pain management here:

As part of the Neuroendocrine Cancer UK Virtual Summit 2020, Dr Ros Taylor, Palliative Specialist talks about difficult pain and Neuroendocrine tumours.Visit...

18/08/2025

Over the next couple of weeks, we have a wide range of support groups taking place - both face-to-face locally and online, so there’s something for everyone.

Online groups include:

- Support Group – Bowel (including Re**um)

- Support Group – Pancreas & Duodenum

✨ Plus, our local face-to-face groups continue to bring people together in safe, supportive spaces across the UK.

These groups are a chance to:
🤝 Connect with others who understand
💬 Share experiences and tips
🌱 Find support for yourself and your loved ones

🔗 For dates and how to join, visit: https://www.neuroendocrinecancer.org.uk/events/

14/08/2025

🩰 “I am more than the sum of my illnesses; more than the language used to define them.”

Katie was a ballet dancer before she became ill in her twenties. First came a diagnosis of ME. Then, years later, came her diagnosis of pancreatic neuroendocrine cancer.

Her story is one of eloquence, insight, and quiet strength - from classical music during MRI scans to marching through hospital doors with an imaginary entourage of historic women. She reminds us that creativity can coexist with illness, and that softness can be a kind of power.

📖 Read Katie’s full story
🔗 https://www.neuroendocrinecancer.org.uk/faces-of-ncuks/illness-upon-illness-by-katie/

12/08/2025

“Neuroendocrine Cancer is a slow-growing cancer.”
❌ Not always.

While some Neuroendocrine Tumours (NETs) grow slowly, others can grow more rapidly. And Neuroendocrine Carcinomas (NECs) are fast-growing from the start.

The difference lies in the “differentiation” – how the cells behave and look under a microscope.

Understanding these classifications is key to diagnosis, treatment planning, and outcomes.

📖 Want to know more about NETs vs NECs?
Visit our website & read our free online handbook 👉 https://ow.ly/AJKR50WBWzg

11/08/2025

🌟 You’re Not Alone – Join Our Support Groups & Events 🌟

Whether you're looking to share, listen, or simply connect, we’ve got a range of support groups and events for everyone in the Neuroendocrine Cancer community:

💬 Chat with Kate / Olivia – A welcoming space for open conversation
🎗️ Pancreas & Duodenum-specific group – For those living with these neuroendocrine cancer types
📍 Regional online groups – Northern Ireland & East of England
🤝 Local in-person groups – Connect face-to-face with others nearby

Wherever you are on your journey, there's a group for you 💛
Find upcoming dates and register via our website 👉 https://www.neuroendocrinecancer.org.uk/events/

08/08/2025

July was filled with powerful advocacy, community connection, and inspiring support. Here's a snapshot of what we've been up to:

🏛️ Rare Cancers Bill
The Rare Cancers Bill has successfully passed through the House of Commons and is now progressing to the House of Lords for its second reading. This is a huge step forward! A heartfelt thank you to Nikie for her tireless work on this, and to everyone in our community who contacted their MPs to show support.

🤝 Support in the Southwest
Nikie also visited our Plymouth and Bristol support groups, thanking our brilliant facilitators in person. She spoke at the Bristol Patient Day Event at the Penny Brohn Centre, where patients, families, and professionals came together to connect and learn.

🌍 Global Patient Advocacy
CEO, Cathy led an international discussion with INCA members from Australia, Africa, the USA, India, Norway, and the UK, exploring patient empowerment and self-advocacy. The message was clear: wherever you live, being heard, respected, and included in care decisions is essential - not optional.

🔐 Protecting Our Community
Our team completed data protection training, reaffirming our commitment to safeguarding personal data and maintaining trust.

🎽 Inspiring Fundraising
Craig and Clare visited Loxdale Primary School to thank them for their amazing fundraising efforts! They raised £4,117.20 through a charity fun run!

💬 Webinar: “Tired of Fatigue”
In July, we hosted a webinar with guest speaker Claire Kempton from Maggie’s Oxford, focusing on understanding and managing cancer-related fatigue - a common but often overlooked issue in NET care.

💛 We don’t receive any government funding. If you value what we do, please consider donating or setting up a monthly gift - just £3/month can help us reach more people.

📩 Subscribe to our Loop newsletter for news, resources, and events.
🔗 https://ow.ly/foKj50WC17V

08/08/2025

🎉 Fundraiser Friday 🎉
From gala nights and Ironman feats, this week’s fundraisers have gone above and beyond - raising funds, honouring loved ones, and bringing visibility to Neuroendocrine Cancer!

🏊‍♂️🚴‍♂️🏃‍♂️ Thomas – Thomas took on the brutal Swansea Half Ironman, swimming 1.9km, cycling 90km, and running a half-marathon in scorching heat and raised £1,458.94 in the process! Thank you, Thomas, for turning your personal challenge into something so impactful.

🚴‍♂️🇮🇪 John – Pedal for Dan - In memory of his close friend Dan, John cycled 660km along the Wild Atlantic Way with Dan’s brothers and friend, raising a phenomenal £7,235.94 for our cause - an incredible tribute to a much-loved friend.

💃 Jade – Forever in Our Hearts Gala Night
Organised in honour of her father (who lives with neuroendocrine cancer) and in memory of her grandfather, Jade’s gala brought people together for an evening of celebration and remembrance - raising £513.67.

🏃‍♀️ Gemma – Throwback to 2024! Gemma ran the Henley Half in honour of her dad, who was diagnosed with pancreatic neuroendocrine cancer. Gemma and her team raised £1,453.75 and brought powerful awareness to a rarely known cancer.

💛 A huge thank you to everyone who took on these challenges, honoured loved ones and helped push the message forward: neuroendocrine cancer matters... and so do the people affected by it.

We still have a couple of places in the 2025 Great South Run! Please get in touch if you'd like to run for our cause.