Trigger Warning: Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.
Disclaimer: The stories and opinions shared here reflect the personal experiences and views of the authors and contributors. They do not necessarily represent the opinions or positions of Neuroendocrine Cancer UK.
Melanie’s Lung Neuroendocrine Cancer Story
Name: Melanie Neuroendocrine Cancer Site: Lung NETS (also known as Typical Carcinoid Lung) ...
The Gift of Grandchildren: Margaret’s Story
Name: Margaret Watt Diagnosed: 2018. Primary Site: Small Bowel UK NET Centre of Excellence:...
A Businessman’s Blog, By Alan
Primary Neuroendocrine Cancer Site: Pancreas NET Centre of Excellence: The Christie NHS Foundation...
Recognising a hypo, by Martin
Well, that was an interesting weekend. For the last 2 years I’ve been managing my blood glucose...
Pushing for a Pathway, by Chris
Name: Chris Neuroendocrine Cancer Site: Lung Hospital: Royal Free We’re delighted to welcome Chris...
Taking Part in Research, by Leanne
Name: Leanne Neuroendocrine Cancer Site: Primary tumour in my rectum and metastases in my liver...
PRRT, Two Years on, by Tricia
Name: Tricia Hospital: The Royal Free - When my Professor told me that he would be...
Long Time Living with Lanreotide, by Carolyn
Name: Carolyn Neuroendocrine Cancer Site: Bowel and secondary liver mets Hospital: Royal Free...
Coping with Sc-Anxiety by Kate Quirk
One way or another, a cancer diagnosis is life changing. And when you are living with cancer,...
My Life on Cap/Tem, by Terrie
Name: Terrie Neuroendocrine Cancer Site: Small Bowel with Liver Metastases Hospital: The Christie...
Lung Biopsy, by Davinya
Name: Davinya Neuroendocrine Cancer Site: Lung Hospital: The Christie Hospital, Manchester -...
Neurodivergence and Neuroendocrine Cancer
Neurodivergence is wider than autism, but this piece specifically refers to autism. - Autism is a...
From Frightened to Enlightened, By Lesley
Name: Lesley Neuroendocrine Cancer Site: Bowel, Liver Hospital: Royal Free - My name is Lesley...
Living with Stage 4 Neuroendocrine Cancer – Restoring Resilience, by Angela
Name: Angela Neuroendocrine Cancer Site: Ileal, small intestine with metastases in my liver,...
Compassion Fatigue, by Polly
A ‘carer’s’ experience is not the same as a patient's. It can’t be. But the fallout from the...
My Lottery Win, By Gary
Name: Gary Neuroendocrine Cancer Site: Small Bowel Neuroendocrine Tumours with Liver Metastases. ...
Having a Cancer That No One Had Heard Of, Carolyn’s Story
Name: Carolyn Neuroendocrine Cancer Site: Bowel Hospital: The Royal Free - Carolyn's Story My name...
From Business Analyst to Caregiver Advocate: Polly’s Story
I’m Polly, 68 years old. In a former life I was a Business Analyst and IT Project Manager. Taking...
Having Neuroendocrine Cancer is a Full-time Job, by Caroline
Name: Caroline Neuroendocrine Cancer Site: Colon. - My name is Caroline Griffiths and I’m 56 years...
PRRT Funding: Michelle’s Story
Name: Michelle Neuroendocrine Cancer Site: Primary: Adrenal gland with secondaries in lungs,...
Newly Diagnosed, by Marie
Name: Marie Martin Neuroendocrine Cancer Site: Pancreatic Primary - I’d rather not be writing this...
Finding Strength in Community: Carole’s Neuroendocrine Cancer Story
Carole's Story Neuroendocrine Cancer Site: Pancreas Hospital: The Christie, Manchester Carole...
My ‘Friend’, CAPTEM
Written by Cynthia, neuroendocrine cancer patient. Neuroendocrine cancer site: Pancreas. Hospital:...
Caring For a Loved One at Home. It’s All About Respect, By Sue
- Many of you will know or will have read my previous blogs about my husband Ian’s story and how...
Acceptance, Slowing Down and Coming to Terms with my Life Now, by Lisa
Story by: Lisa Neuroendocrine cancer site: Lung Hospital: The Christie, Manchester - My...
This is my husband, Andrew Cheetham
In memory of Andrew, written by his wife, Faye. - - I had known Andrew throughout my teenage...
A Fond Farewell to and Celebration of Barrie Edward Dack 1944 – 2023
I first met Barrie, not long after I joined Neuroendocrine Cancer UK, about 7 years ago, at a...
Decisions on Treatment Options, by Jane
Name: Jane Since my diagnosis seven years ago, after a long search for the reason for my...
From Diagnosis to YouTube, by Alan
Name: Alan Neuroendocrine Cancer Site: Pancreas Alan's story I'm a father with two adult...
From GP to Fundraiser: Dougie’s Inspiring Story
Hi. I’m Dougie, a 59-year-old retired GP from South Lincolnshire, though originally from...
That Fraudulent Feeling… by Simon
That Fraudulent Feeling … The last time I put pen to paper was November 2021 when I wrote a blog...
Becoming Your Own Expert by Ronny Allan
Recorded November 2020.
But Debra, you look so well …
But Debra, you look so well … Some of you will recall that I was diagnosed with Neuroendocrine...
Finding a new role in life after a cancer diagnosis, by Simon
I was a “typical boy” throughout my own education. I did as little as possible and hoped for the...
From Cancer Diagnosis to Parenting with Purpose, by Kate
Name: Kate Neuroendocrine Cancer site: Tail of pancreas and secondaries in the liver KATE'S...
Stable: So, is that it?
For six years my life with Neuroendocrine Cancer has had a rhythm that has enabled me to live a...
Travelling – Be Prepared: Kath Lewis
On the whole, travel should be fairly easy in everyday life, with the odd curveball thrown in here...
You couldn’t write it …
You couldn’t write it … by Jane Dayus-Hinch Four weeks ago, I woke up with a headache, which is...
Ten years on and counting…..
Towards the end of 2022, we passed the milestone of ten years since my husband Ian was first...
Chrissie Barlow – My NETS Journey … to Liver Transplant and Beyond
I was diagnosed with my first Neuroendocrine Tumour (NET) in 1997, when I was just 24. It was in...
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...
Who we were before a cancer diagnosis
WHO WE WERE BEFORE A CANCER DIAGNOSIS AND WHO WE ARE NOW - THE FACE IN THE MIRROR Before life...
“The Cancer That Just Keeps Giving”, by Bethann
I was diagnosed in May 2019 and can remember thinking “Ok, I think I know what I have ahead...
Radioligand (PRRT) – Cycles 5 & 6, by Carolyn
For any of you who have had the magic words ‘PRRT’ mentioned as part of your treatment & you...
BLOG – Diary of a Cancer
I suppose it all started with a Heart Attack at the end of March 2019. This has since been queried...
Chris
Name: Chris Age: 36 Primary Site: Central right Lung Chris's Story Diagnosed in February 2022...
When Inoperable Becomes Operable
I’m Leanne, I’m 48 years old and I was diagnosed with Neuroendocrine Cancer in September 2019....
Graham Hunt
Hello friends. My name is Graham Shankarji Hunt, I'm 73 years old and in retirement, I am a...
My Experiences With CAPTEM Chemotherapy and 10 Tips
My Experiences With CAPTEM Chemotherapy and 10 Tips I was diagnosed with Lung Neuroendocrine...
Pete, Patient and Fundraiser
We are all affected by cancer in some way at some point in our lives. I would be very grateful for...
Coping with a Neuroendocrine Cancer Diagnosis and Dealing with the Shock
by Karen Edwards The last 6 months for me have been a rollercoaster of health and emotions. I have...
Linda, Lung Neuroendocrine Cancer
I was 64 when in February 2020 I was diagnosed with a carcinoid tumour in my left lung. I’d had...
Daily Affirmations, by Huw
For years I’ve done simple affirmations each morning to help wire the foundation of my internal...
Tips on finding your way through the NHS system
So you have received your diagnosis from your Multi-Disciplinary Team and if, like me, have just...
Wife/Carer/Companion
I was a partner when Neuroendocrine Cancer came into our lives. We had been together for 26 years,...
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...
Pete, patient and fundraiser
Name: Pete Neuroendocrine Cancer Site: Pancreas with liver mets. I am cycling from North to South...
Judy, Patient
Name: Judy Age: 69 Neuroendocrine Cancer site: Small Bowel and metastasis to the Liver Judy's...
Living With Watch & Wait (Long Term), by Martin
Introduction For me, Watch & Wait started in 2003. Watch & Wait is a common support...
PRRT, the Truth, by Barrie Dack
Asked if you would like to go on a clinical trial for PRRT (Peptide Receptor Radionuclide Therapy)...
Living with Watch & Wait, by Kath
A Long Time … Watching and Waiting I received my diagnosis of ‘Watch and Wait’ in June 2015,...
Paul
Name: Paul Age: 55 Neuroendocrine Cancer Site: Pancreas Paul's story: I was struggling with...
Sally
Name: Sally Neuroendocrine Cancer Site: Caecum Sally's Story: After feeling so tired and...
Debra
Debra (51). Diagnosed February 2021 Rare Rectal Primary with Liver Mets I recall visiting my GP in...
Life as a carer – The rollercoaster it takes you on
I have never liked rollercoasters, even pushing my children on the park roundabout was enough for...
I’m Fine … no, really ….”
Reproduced with thanks to Alan, friend of award-winning advocate for the cancer community, Chris...
Early Retirement Due to Ill Health, by Simon
I was diagnosed with two PNETs (Pancreatic NETs) at the age of 35, one at either end of my...
Christina, Nurse Clinician
My name is Christina Nuttall and I'm one of the Nurse Clinicians at The Christie NHS Foundation...
Peter’s vlog
As a hobby, I had been making short videos for my YouTube channel sharing my love of health,...
Neuroendocrine Cancer and Sight Issues
Name: Mel Age: 74 Neuroendocrine Cancer Site: Primary in bowel, secondary liver initially Mel's...
Rajpreet, Supporter
Name: Ranjpreet Supporter: Father has oesophageal Neuroendocrine Cancer. Ranjpreet's Story: 💬 My...
Always light within the shade
OUR EXPERIENCES OF LIVING WITH NEUROENDOCRINE CANCER My husband Ian was diagnosed almost exactly...
Natalie, Neuroendocrine Cancer Clinical Nurse Specialist
I LOVE MY JOB The impact of a cancer diagnosis is life changing, not only for the patient but also...
Kevin, Patient
Name: Kevin Age: 53 Neuroendocrine Cancer Site: Small Intestine / Liver Kevin's Story: I was...
Maxine, Patient
Name: Maxine Neuroendocrine Cancer Site: Small Bowel NOT THE LIFE WE PLANNED …. It was October...
Allison, Patient
Name: Allison Age: 41 Neuroendocrine Cancer Site: Primary - Pancreas with Lymph Node spread...
Sophie, Patient
Name: Sophie Age: 52 Neuroendocrine Cancer Site: Glucagonoma - pancreas (primary), paraaortic...
PRRT – A Carer’s Journey
EXPERIENCES OF PRRT We were very grateful to be given the opportunity of fighting Ian’s...
Deborah, Patient
Name: Deborah Age: 60 Neuroendocrine Cancer Site: Primary to small bowel. Metastasis to liver....
Working with Cancer, by Lesley
WORKING WITH CANCER What do you do when your employer is expecting the worst for you ‘just’...
Barbara, Patient
Name: Barbara Age: 58 Neuroendocrine Cancer Site: Lung Barbara's story: November 2019 I was...
Sarah, Patient
Name: Sarah Age: 42 Neuroendocrine Cancer Site: MINEN in colon Sarah's Story: I was feeling pretty...
Stage 4… and I’m not dead yet, by Sally
This is the sort of situation where terminology can trip us up. I was diagnosed in 2009 with...
Donna, Patient
Name: Donna Age: 57 Neuroendocrine Cancer Site(s): Primary lung, metastasis to the liver Donna's...
Don’t be afraid to ask for help!
My family and friends got me through this - I cannot emphasise enough how important a support...
Lisa, Patient
Name: Lisa Age: 51 Neuroendocrine Cancer site(s): Primary is unknown and metastasis to the Liver....
Maxine, Patient
I’m Maxine Patterson and seventy-four years old. I was a deputy headteacher, but my first love was...
Fighting Cancer with George
Aged 24, diagnosed with Neuroendocrine Cancer of the Pancreas. You can follow George's journey and...
Martin, Patient
Hi I’m Martin, 57 years old, long-term Pancreatic Neuroendocrine patient. I guess all good stories...
Christina, Patient
PURSUING A PARAGANGLIOMA Looking back now, all the pieces fit together. However, at the time it...
Donna, Patient
Name: Donna Age: 56 Neuroendocrine Cancer site(s): Primary = bowel and Secondary = liver Donna's...
Janet, Patient
My name is Janet, I am 66 years young and have been diagnosed with NET’s in my bowel, liver and...
The Sweeping Tide of Family Emotions, by Lesley Porch
I am a Wife, a Mum, a Grandmother, a Sister, an Aunt and of course, a Friend. How hard was it for...
Jane, Patient
LIKE BEING HIT BY A BASEBALL BAT I was so shocked when I was diagnosed with a Neuroendocrine...
You are still you, by Kath Lewis
Being diagnosed with neuroendocrine cancer tips life upside down (as will any type of cancer...
A Gentle Giant’s Approach by Ray Neville (6ft 4!)
I found the NETS patient Facebook forum so helpful since my diagnosis in June 2019. Everyone has...
Top Tips by Rodney Vowler
WHEN THE DUST began to settle a little after my Neuroendocrine Cancer diagnosis, I began to look...
Being listened to by Bethann Siviter
Emergency Hospitalisation in October 2020, I had a skin infection and a moderately high temp, and...
Living with Lanreotide by Kate Quirk
Lanreotide and I have been living-in-sin for three years now. Before that, I spent a year with...
Olivia Williams, Patient
It was June 2018, I was in LA filming season 2 of the TV show Counterpart, pretending to be in...
Tony Attwood, Patient
My name is Tony Attwood. I was diagnosed with Neuroendocrine cancer following abdominal surgery in...
Rodney Vowler, Patient
It took 13 years to get a diagnosis. My life saver was being diagnosed as being coeliac. That did...
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...
A site by Ronny Allan – Living with Neuroendocrine Cancer
Welcome to the website of Ronny Allan who was diagnosed with incurable Metastatic Neuroendocrine...
A Road Less Travelled – Living with Neuroendocrine Cancer by Kath Lewis
At the age of 53 on the 20th June 2015, I was told that I had a Neuroendocrine tumour, which had...
Beauty & the Big C by Laura Anderson
Irish Gilmore Girl. Aged 33. Neuroendocrine Cancer patient. Incurable but treatable? Trying to...
Marion, NCUK Trustee
I became a Trustee of the then NET Patient Foundation (now Neuroendocrine Cancer UK) in 2012...
Peter, NCUK Trustee
Peter helped found the patient support group, ‘Living with Carcinoid’, with his late wife Liddy in...
Martin, Patient
Hello, my name is Martin Brown, I am 55 years old, married to Wendy and we have 2...
Sally, Patient
My name is Sally Jenkins and I am a retired computer systems analyst and lecturer living in South...
Raj, Gastroenterologist & Trustee
I am Dr. Raj Srirajaskanthan, I work as a gastroenterologist and have a specialist interest in...
Mark, Patient
It was just before Christmas 2017 when I quickly opened the post (on my own, standing in the...
Lucy, Supporter
NCUK have invited me and my lovely Dad to share our story of his battle with this awful disease...
Ruth, Patient
Thanks for the invitation to tell about myself for the « Faces of NCUK « campaign. I am a patient...
Professor John Ramage, King’s Health Partners NET Centre
I am Professor John Ramage, a consultant physician in gastroenterology and hepatology, honorary...
Ros, Patient & NCUK Trustee
At the time of my diagnosis almost 10 years ago, I was a busy solicitor working full time and...
Richard, Patient
Hi my name is Richard. I have 4 kids and live in Essex. Five years ago I was diagnosed with a...
Angie – CNS, Newcastle
Hi my name is Angie and 14 years ago my mam was diagnosed with a neuroendocrine tumour (NET) and...
Leanne, NCUK
Hello, I am Leanne. A mother to a 3 year old, living in Warwickshire. In 2016 I saw an...