Neuroendocrine Cancer UK
@neuroendo-can-uk.bsky.social
Our purpose is to support and inform patients and families from diagnosis, enabling access to the best care and treatment whilst stimulating neuroendocrine cancer research, increasing national awareness, and influencing improvements in outcomes.
Karen’s story highlights the impact of specialist dietetic support after small bowel neuroendocrine cancer surgery. NET-informed dietary advice helped her manage bloating, reflux, and steatorrhea, and significantly improved her quality of life. www.neuroendocrinecancer.org.uk/faces-of-ncu...
A Dietician Transformed my NET Journey, by Karen - Neuroendocrine Cancer UK
Karen shares her experience of being diagnosed with small bowel neuroendocrine cancer, major surgery, and how specialist dietetic support helped her manage symptoms, regain confidence with food, and i...
www.neuroendocrinecancer.org.uk
January 22, 2026 at 4:23 PM
Karen’s story highlights the impact of specialist dietetic support after small bowel neuroendocrine cancer surgery. NET-informed dietary advice helped her manage bloating, reflux, and steatorrhea, and significantly improved her quality of life. www.neuroendocrinecancer.org.uk/faces-of-ncu...
This morning, we joined CRUK at the House of Lords to discuss challenges in UK cancer research and how to overcome them.
www.surveymonkey.com/r/93885SM
www.surveymonkey.com/r/93885SM
December 9, 2025 at 5:44 PM
This morning, we joined CRUK at the House of Lords to discuss challenges in UK cancer research and how to overcome them.
www.surveymonkey.com/r/93885SM
www.surveymonkey.com/r/93885SM
After diagnosis, surgeries & treatment, Leanne didn’t give up. She adapted, persevered - and became a 5th Dan Black Belt in Taekwondo while living with neuroendocrine cancer.
An incredible story of strength, focus & hope.
📖 Read her story: www.neuroendocrinecancer.org.uk/faces-of-ncu...
An incredible story of strength, focus & hope.
📖 Read her story: www.neuroendocrinecancer.org.uk/faces-of-ncu...
Mastering Taekwondo and Cancer, by Leanne - Neuroendocrine Cancer UK
After being diagnosed with neuroendocrine cancer, Leanne Armstrong refused to give up on her passion for Taekwondo. Through surgeries, treatments, and setbacks, she found strength, purpose, and pride ...
www.neuroendocrinecancer.org.uk
November 13, 2025 at 6:52 PM
After diagnosis, surgeries & treatment, Leanne didn’t give up. She adapted, persevered - and became a 5th Dan Black Belt in Taekwondo while living with neuroendocrine cancer.
An incredible story of strength, focus & hope.
📖 Read her story: www.neuroendocrinecancer.org.uk/faces-of-ncu...
An incredible story of strength, focus & hope.
📖 Read her story: www.neuroendocrinecancer.org.uk/faces-of-ncu...
📈 Neuroendocrine cancer incidence has risen 371% (1995–2018) - yet awareness remains low.
We must do more to recognise and diagnose it earlier.
🔗 Learn more about neuroendocrine cancer: www.neuroendocrinecancer.org.uk
We must do more to recognise and diagnose it earlier.
🔗 Learn more about neuroendocrine cancer: www.neuroendocrinecancer.org.uk
November 7, 2025 at 3:57 PM
📈 Neuroendocrine cancer incidence has risen 371% (1995–2018) - yet awareness remains low.
We must do more to recognise and diagnose it earlier.
🔗 Learn more about neuroendocrine cancer: www.neuroendocrinecancer.org.uk
We must do more to recognise and diagnose it earlier.
🔗 Learn more about neuroendocrine cancer: www.neuroendocrinecancer.org.uk
Patients see their GP 11 times on average before being diagnosed with neuroendocrine cancer.
That’s 11 missed chances for answers.
Early recognition saves lives.
Learn more at: www.neuroendocrinecancer.org.uk
That’s 11 missed chances for answers.
Early recognition saves lives.
Learn more at: www.neuroendocrinecancer.org.uk
November 5, 2025 at 4:00 PM
Patients see their GP 11 times on average before being diagnosed with neuroendocrine cancer.
That’s 11 missed chances for answers.
Early recognition saves lives.
Learn more at: www.neuroendocrinecancer.org.uk
That’s 11 missed chances for answers.
Early recognition saves lives.
Learn more at: www.neuroendocrinecancer.org.uk
⏱️ It takes an average of 4.5 years from first symptom to a neuroendocrine cancer diagnosis.
That’s 4.5 years too long.
Early recognition and awareness can save lives.
Learn more 👉 www.neuroendocrinecancer.org.uk
That’s 4.5 years too long.
Early recognition and awareness can save lives.
Learn more 👉 www.neuroendocrinecancer.org.uk
November 4, 2025 at 6:52 PM
⏱️ It takes an average of 4.5 years from first symptom to a neuroendocrine cancer diagnosis.
That’s 4.5 years too long.
Early recognition and awareness can save lives.
Learn more 👉 www.neuroendocrinecancer.org.uk
That’s 4.5 years too long.
Early recognition and awareness can save lives.
Learn more 👉 www.neuroendocrinecancer.org.uk
Reposted by Neuroendocrine Cancer UK
After 20 years of exceptional leadership, Catherine Bouvier Ellis, the founding CEO of @neuroendo-can-uk.bsky.social , is stepping down.
THANK YOU to Cathy for her grand contribution.
INCA welcomes Lisa as CEO, wishing her inspiration and success!
Read more: shorturl.at/kVZea
#LetsTalkAboutNETs
THANK YOU to Cathy for her grand contribution.
INCA welcomes Lisa as CEO, wishing her inspiration and success!
Read more: shorturl.at/kVZea
#LetsTalkAboutNETs
October 24, 2025 at 6:55 AM
After 20 years of exceptional leadership, Catherine Bouvier Ellis, the founding CEO of @neuroendo-can-uk.bsky.social , is stepping down.
THANK YOU to Cathy for her grand contribution.
INCA welcomes Lisa as CEO, wishing her inspiration and success!
Read more: shorturl.at/kVZea
#LetsTalkAboutNETs
THANK YOU to Cathy for her grand contribution.
INCA welcomes Lisa as CEO, wishing her inspiration and success!
Read more: shorturl.at/kVZea
#LetsTalkAboutNETs
Alan and his wife Kate shared their lived experience of #NeuroendocrineCancer at a Novartis training event - reminding everyone why the patient voice matters in research and care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
Representing the Patient Voice: Alan’s Ambassador Story - Neuroendocrine Cancer UK
Alan and his wife, Kate, share their experience as patient and partner advocates, representing the neuroendocrine cancer community at a Novartis training event. Their honest, emotional story reminds u...
www.neuroendocrinecancer.org.uk
October 29, 2025 at 5:39 PM
Alan and his wife Kate shared their lived experience of #NeuroendocrineCancer at a Novartis training event - reminding everyone why the patient voice matters in research and care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
Told he had months to live, Matthew is now four years into his advanced lung #NeuroendocrineCancer diagnosis.
His story highlights resilience, the value of CNS support, and the power of multidisciplinary care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
His story highlights resilience, the value of CNS support, and the power of multidisciplinary care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
Living Beyond the Prognosis, by Matthew - Neuroendocrine Cancer UK
Matthew was diagnosed with advanced lung neuroendocrine cancer in 2021, told he had months to live. Four years later, he continues to defy the odds, sharing his powerful story of resilience, treatment...
www.neuroendocrinecancer.org.uk
October 22, 2025 at 5:03 PM
Told he had months to live, Matthew is now four years into his advanced lung #NeuroendocrineCancer diagnosis.
His story highlights resilience, the value of CNS support, and the power of multidisciplinary care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
His story highlights resilience, the value of CNS support, and the power of multidisciplinary care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
🌊 New #Podcast! Cathy speaks with Ruth, founder of Daily Dip 4 Dave, inspired by her husband Dave’s #NeuroendocrineCancer journey.
Hear about the challenge, her most memorable dips & how YOU can join the National Dip Day on Oct 11, 2025. 🎧 ow.ly/rWUM50X5uV6
Hear about the challenge, her most memorable dips & how YOU can join the National Dip Day on Oct 11, 2025. 🎧 ow.ly/rWUM50X5uV6
October 2, 2025 at 11:21 AM
🌊 New #Podcast! Cathy speaks with Ruth, founder of Daily Dip 4 Dave, inspired by her husband Dave’s #NeuroendocrineCancer journey.
Hear about the challenge, her most memorable dips & how YOU can join the National Dip Day on Oct 11, 2025. 🎧 ow.ly/rWUM50X5uV6
Hear about the challenge, her most memorable dips & how YOU can join the National Dip Day on Oct 11, 2025. 🎧 ow.ly/rWUM50X5uV6
“Sound familiar? I’d been trying to get a diagnosis for over 3 years before I finally found out I had pancreatic #NeuroendocrineCancer.”
Jon highlights delayed diagnosis, treatment with Lanreotide & Everolimus, & managing long-term side effects.
www.neuroendocrinecancer.org.uk/faces-of-ncu...
Jon highlights delayed diagnosis, treatment with Lanreotide & Everolimus, & managing long-term side effects.
www.neuroendocrinecancer.org.uk/faces-of-ncu...
NETS and Everolimus, by Jon - Neuroendocrine Cancer UK
Read Jon’s story of living with stage 4 pancreatic neuroendocrine cancer. From delayed diagnosis to treatment with Lanreotide and Everolimus, he shares the challenges, side effects, and the importance...
www.neuroendocrinecancer.org.uk
September 18, 2025 at 4:15 PM
“Sound familiar? I’d been trying to get a diagnosis for over 3 years before I finally found out I had pancreatic #NeuroendocrineCancer.”
Jon highlights delayed diagnosis, treatment with Lanreotide & Everolimus, & managing long-term side effects.
www.neuroendocrinecancer.org.uk/faces-of-ncu...
Jon highlights delayed diagnosis, treatment with Lanreotide & Everolimus, & managing long-term side effects.
www.neuroendocrinecancer.org.uk/faces-of-ncu...
Carcinoid Syndrome (CS) is the most frequent hormonal syndrome in functioning NETs, marked by flushing & diarrhoea with elevated serotonin/5-HIAA.
Atypical CS (lung, stomach, duodenum, ovary) may cause patchy flush, wheeze, hypotension & more.
youtu.be/0IjLN7TkFhI
Atypical CS (lung, stomach, duodenum, ovary) may cause patchy flush, wheeze, hypotension & more.
youtu.be/0IjLN7TkFhI
Carcinoid Syndrome - Explained
YouTube video by Neuroendocrine Cancer UK
youtu.be
September 9, 2025 at 9:37 AM
Carcinoid Syndrome (CS) is the most frequent hormonal syndrome in functioning NETs, marked by flushing & diarrhoea with elevated serotonin/5-HIAA.
Atypical CS (lung, stomach, duodenum, ovary) may cause patchy flush, wheeze, hypotension & more.
youtu.be/0IjLN7TkFhI
Atypical CS (lung, stomach, duodenum, ovary) may cause patchy flush, wheeze, hypotension & more.
youtu.be/0IjLN7TkFhI
💬 “Emotional support is every bit as important as medical support.”
Cancer care must go beyond scans & treatment - we must also address the emotional toll. For people with neuroendocrine cancer, holistic support matters.
Cancer care must go beyond scans & treatment - we must also address the emotional toll. For people with neuroendocrine cancer, holistic support matters.
September 3, 2025 at 12:59 PM
💬 “Emotional support is every bit as important as medical support.”
Cancer care must go beyond scans & treatment - we must also address the emotional toll. For people with neuroendocrine cancer, holistic support matters.
Cancer care must go beyond scans & treatment - we must also address the emotional toll. For people with neuroendocrine cancer, holistic support matters.
Neuroendocrine cancer symptoms are often vague or misdiagnosed. David, a GP, experienced abdominal pain from 2003 - finally diagnosed in 2016 with a midgut NET.
Watch his story & help raise symptom awareness among peers & patients.
🔗 youtu.be/dNSCcr3QTrg?...
Watch his story & help raise symptom awareness among peers & patients.
🔗 youtu.be/dNSCcr3QTrg?...
David's Neuroendocrine Cancer Story
YouTube video by Neuroendocrine Cancer UK
youtu.be
August 5, 2025 at 11:00 AM
Neuroendocrine cancer symptoms are often vague or misdiagnosed. David, a GP, experienced abdominal pain from 2003 - finally diagnosed in 2016 with a midgut NET.
Watch his story & help raise symptom awareness among peers & patients.
🔗 youtu.be/dNSCcr3QTrg?...
Watch his story & help raise symptom awareness among peers & patients.
🔗 youtu.be/dNSCcr3QTrg?...
Paul’s neuroendocrine cancer story: small bowel primary with liver mets, Lanreotide therapy, 2 major resections, and 77 days in hospital. His story highlights the impact of MDT-led care and patient resilience.
📖 Read: www.neuroendocrinecancer.org.uk/faces-of-ncu...
📖 Read: www.neuroendocrinecancer.org.uk/faces-of-ncu...
Living with Small Bowel Neuroendocrine Cancer and Liver Metastases, by Paul - Neuroendocrine Cancer UK
Read Paul’s inspiring journey of living with small bowel neuroendocrine cancer and liver metastases. From multiple surgeries and Lanreotide treatment to recovery and long-distance walks, he shares hop...
www.neuroendocrinecancer.org.uk
July 31, 2025 at 2:26 PM
Paul’s neuroendocrine cancer story: small bowel primary with liver mets, Lanreotide therapy, 2 major resections, and 77 days in hospital. His story highlights the impact of MDT-led care and patient resilience.
📖 Read: www.neuroendocrinecancer.org.uk/faces-of-ncu...
📖 Read: www.neuroendocrinecancer.org.uk/faces-of-ncu...
🎙️ New episode: Two Neuroendocrine Cancer UK professionals, Kate & Craig, share their unique perspectives as both staff and neuroendocrine cancer patients.
A powerful look at bridging lived experience with professional roles in cancer support.
🎧 Listen now: www.neuroendocrinecancer.org.uk/podcast/
A powerful look at bridging lived experience with professional roles in cancer support.
🎧 Listen now: www.neuroendocrinecancer.org.uk/podcast/
July 17, 2025 at 12:38 PM
🎙️ New episode: Two Neuroendocrine Cancer UK professionals, Kate & Craig, share their unique perspectives as both staff and neuroendocrine cancer patients.
A powerful look at bridging lived experience with professional roles in cancer support.
🎧 Listen now: www.neuroendocrinecancer.org.uk/podcast/
A powerful look at bridging lived experience with professional roles in cancer support.
🎧 Listen now: www.neuroendocrinecancer.org.uk/podcast/
⚠️ Outdated & misleading: “Carcinoid” fails to reflect the malignant potential of neuroendocrine neoplasms & should no longer be used.
Clear terminology = better understanding, earlier diagnosis, improved care.
www.neuroendocrinecancer.org.uk
Clear terminology = better understanding, earlier diagnosis, improved care.
www.neuroendocrinecancer.org.uk
July 15, 2025 at 2:14 PM
⚠️ Outdated & misleading: “Carcinoid” fails to reflect the malignant potential of neuroendocrine neoplasms & should no longer be used.
Clear terminology = better understanding, earlier diagnosis, improved care.
www.neuroendocrinecancer.org.uk
Clear terminology = better understanding, earlier diagnosis, improved care.
www.neuroendocrinecancer.org.uk
Midge was diagnosed with a small bowel neuroendocrine tumour in 2023. With support from Queen Elizabeth Hospital Birmingham, he’s now self-injecting Lanreotide and managing well.
A candid, empowering patient perspective.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
A candid, empowering patient perspective.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
From Diagnosis to Doing My Own Jab: My Lanreotide Learning Curve, Midge’s Story - Neuroendocrine Cancer UK
Discover Midge's journey with neuroendocrine cancer, from diagnosis to self-injecting Lanreotide at home. Honest, practical insights from life on treatment – with humour, hope, and real-world advice f...
www.neuroendocrinecancer.org.uk
July 9, 2025 at 1:30 PM
Midge was diagnosed with a small bowel neuroendocrine tumour in 2023. With support from Queen Elizabeth Hospital Birmingham, he’s now self-injecting Lanreotide and managing well.
A candid, empowering patient perspective.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
A candid, empowering patient perspective.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
In our latest webinar, Nikie Jervis shares expert insight on Pancreatic & Duodenal Neuroendocrine Neoplasms (NENs) incl. diagnosis, treatment & trials.
Watch now on YouTube: youtu.be/2oVTBm-2HQM?...
🌐 Learn more on our website: neuroendocrinecancer.org.uk
Watch now on YouTube: youtu.be/2oVTBm-2HQM?...
🌐 Learn more on our website: neuroendocrinecancer.org.uk
Pancreatic & Duodenal Neuroendocrine Cancers
YouTube video by Neuroendocrine Cancer UK
youtu.be
June 17, 2025 at 12:52 PM
In our latest webinar, Nikie Jervis shares expert insight on Pancreatic & Duodenal Neuroendocrine Neoplasms (NENs) incl. diagnosis, treatment & trials.
Watch now on YouTube: youtu.be/2oVTBm-2HQM?...
🌐 Learn more on our website: neuroendocrinecancer.org.uk
Watch now on YouTube: youtu.be/2oVTBm-2HQM?...
🌐 Learn more on our website: neuroendocrinecancer.org.uk
“When Deb was diagnosed with neuroendocrine cancer in 2005, I had no idea what we were facing. Finding The Christie changed everything. My advice? Advocate hard. Get to a Centre of Excellence.” — Dave. A 20-year caregiving journey: ow.ly/EA5O50W8AuA
Caring for a Loved One with Neuroendocrine Cancer, by Dave - Neuroendocrine Cancer UK
Dave shares his powerful 20-year journey as a caregiver to his wife, living with stage 4 neuroendocrine cancer. From misdiagnosis to expert care at The Christie, his story offers insight, advice, and ...
ow.ly
June 12, 2025 at 6:37 PM
“When Deb was diagnosed with neuroendocrine cancer in 2005, I had no idea what we were facing. Finding The Christie changed everything. My advice? Advocate hard. Get to a Centre of Excellence.” — Dave. A 20-year caregiving journey: ow.ly/EA5O50W8AuA
New to Neuroendocrine Cancer UK? Don’t miss Season 1 of our 'Not Just NE Cancer' podcast - real stories from patients on symptoms before diagnosis + life after. Hear from Maxine, Simon, Michelle, Debra & Sally.
▶️ Listen now: www.neuroendocrinecancer.org.uk/podcast/
▶️ Listen now: www.neuroendocrinecancer.org.uk/podcast/
Podcast - Neuroendocrine Cancer UK
www.neuroendocrinecancer.org.uk
June 5, 2025 at 10:32 AM
New to Neuroendocrine Cancer UK? Don’t miss Season 1 of our 'Not Just NE Cancer' podcast - real stories from patients on symptoms before diagnosis + life after. Hear from Maxine, Simon, Michelle, Debra & Sally.
▶️ Listen now: www.neuroendocrinecancer.org.uk/podcast/
▶️ Listen now: www.neuroendocrinecancer.org.uk/podcast/
What is neuroendocrine cancer?
It can affect people of any age, occur almost anywhere in the body, and impacts ~6,000 people a year in the UK.
🎥 Watch our short explainer video + explore our patient handbook:
🔗 youtu.be/FhM5v4DyDGU
It can affect people of any age, occur almost anywhere in the body, and impacts ~6,000 people a year in the UK.
🎥 Watch our short explainer video + explore our patient handbook:
🔗 youtu.be/FhM5v4DyDGU
What is Neuroendocrine Cancer? Description & overview
YouTube video by Neuroendocrine Cancer UK
youtu.be
June 3, 2025 at 10:53 AM
What is neuroendocrine cancer?
It can affect people of any age, occur almost anywhere in the body, and impacts ~6,000 people a year in the UK.
🎥 Watch our short explainer video + explore our patient handbook:
🔗 youtu.be/FhM5v4DyDGU
It can affect people of any age, occur almost anywhere in the body, and impacts ~6,000 people a year in the UK.
🎥 Watch our short explainer video + explore our patient handbook:
🔗 youtu.be/FhM5v4DyDGU
“If you think something is wrong with your body, keep telling the medics until someone listens to you.”
Donna’s neuroendocrine cancer was missed on initial scans, but persistence led to diagnosis, surgery, and ongoing care.
Read her story: ➡️ ow.ly/nS8E50W0JVn
Donna’s neuroendocrine cancer was missed on initial scans, but persistence led to diagnosis, surgery, and ongoing care.
Read her story: ➡️ ow.ly/nS8E50W0JVn
When Symptoms Speak Louder Than Scans, by Donna - Neuroendocrine Cancer UK
After four years of unanswered symptoms, Donna was finally diagnosed with neuroendocrine cancer. Read her powerful journey of resilience, misdiagnosis, and the importance of trusting your instincts.
ow.ly
May 29, 2025 at 11:39 AM
“If you think something is wrong with your body, keep telling the medics until someone listens to you.”
Donna’s neuroendocrine cancer was missed on initial scans, but persistence led to diagnosis, surgery, and ongoing care.
Read her story: ➡️ ow.ly/nS8E50W0JVn
Donna’s neuroendocrine cancer was missed on initial scans, but persistence led to diagnosis, surgery, and ongoing care.
Read her story: ➡️ ow.ly/nS8E50W0JVn
Atypical lung neuroendocrine cancer often presents with no symptoms, as patient Melanie Lucas shares in the Daily Express.
Her diagnosis came via the NHS App. Her story highlights why earlier detection and mental health support are crucial.
📖 Read: www.express.co.uk/news/uk/2055...
Her diagnosis came via the NHS App. Her story highlights why earlier detection and mental health support are crucial.
📖 Read: www.express.co.uk/news/uk/2055...
'I had no idea I was dying – and then I found out on the NHS app'
It's terrifying to find out that you're a ticking timebomb.
www.express.co.uk
May 28, 2025 at 10:54 AM
Atypical lung neuroendocrine cancer often presents with no symptoms, as patient Melanie Lucas shares in the Daily Express.
Her diagnosis came via the NHS App. Her story highlights why earlier detection and mental health support are crucial.
📖 Read: www.express.co.uk/news/uk/2055...
Her diagnosis came via the NHS App. Her story highlights why earlier detection and mental health support are crucial.
📖 Read: www.express.co.uk/news/uk/2055...
Lung neuroendocrine cancers are frequently misdiagnosed due to symptom overlap with asthma, infection, or more common lung cancers.
We’re hosting a webinar with Prof Mansoor, The Christie, to discuss clinical signs, diagnostic approaches & support pathways.
🔗 register.enthuse.com/ps/event/Web...
We’re hosting a webinar with Prof Mansoor, The Christie, to discuss clinical signs, diagnostic approaches & support pathways.
🔗 register.enthuse.com/ps/event/Web...
May 27, 2025 at 10:05 AM
Lung neuroendocrine cancers are frequently misdiagnosed due to symptom overlap with asthma, infection, or more common lung cancers.
We’re hosting a webinar with Prof Mansoor, The Christie, to discuss clinical signs, diagnostic approaches & support pathways.
🔗 register.enthuse.com/ps/event/Web...
We’re hosting a webinar with Prof Mansoor, The Christie, to discuss clinical signs, diagnostic approaches & support pathways.
🔗 register.enthuse.com/ps/event/Web...