Stories and Experiences
Welcome to our ‘Not Just NE Cancer’ stories and experiences page. This is a safe space for those who wish to share their story and a place for anyone affected by neuroendocrine cancer to access real-life experiences and advice from those who have experienced it first-hand.
Overall though, of all the ‘gifts’ neuroendocrine cancer has brought into my life, the one I hold closest is the fellowship of those who like me, fight this battle every day – both other patients with Neuroendocrine Cancer and the staff at Neuroendocrine Cancer UK. Like me, they endure the many gifts given by this chronic cancer, whilst also giving the gifts of empathy, understanding, friendship, information, and support.
Each year in the UK, around 6,000 people are diagnosed with a neuroendocrine cancer – and the incidence is rising. Despite this increase, in a recent survey of more than 200 people with neuroendocrine cancer, less than 5% had heard of it… until they were directly affected by it.
You may be one of those people who have never heard of neuroendocrine cancer… you may have been told it is rare. You may feel isolated and afraid.
Here you will learn that you are not alone.
Continue reading to browse and watch stories by neuroendocrine cancer patients, who have bravely shared their experiences of how they became ill, their treatment, and their road to recovery. Many of the stories offer support and handy hints and tips about topics such as; preparing for treatment, or how to care for a loved one with neuroendocrine cancer.
Select play to watch Neuroendocrine Cancer patient and Ambassador, Craig share his experiences.
Trigger warning
Please note that some stories end on a positive note, but some paint a picture of the difficult road that many neuroendocrine cancer patients face.
Disclaimer
The stories and opinions posted are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.
STORIES AND EXPERIENCES
Chris
Name: Chris Age: 36 Primary Site: Central right Lung Chris's Story Diagnosed in February 2022 after visiting a private GP after my NHS GP wouldn’t see me a persistent cough which worsened with...
When Inoperable Becomes Operable
I’m Leanne, I’m 48 years old and I was diagnosed with Neuroendocrine Cancer in September 2019. My primary is in my rectum with metastases to my liver and thyroid. I started Octreotide every 28...
Graham Hunt
Hello friends. My name is Graham Shankarji Hunt, I'm 73 years old and in retirement, I am a singer/songwriter by trade. I've been lucky with my health so far and have only had one stint in hospital...
My Experiences With CAPTEM Chemotherapy and 10 Tips
My Experiences With CAPTEM Chemotherapy and 10 Tips I was diagnosed with Lung Neuroendocrine cancer in February 2021. This was my second cancer diagnosis in less than five years. It all started with...
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 any donation or support you can give for this excellent charity, which covers a wide range of...
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 had IBS for years and it has been unpleasant, painful, unbearable and sometimes absolutely...
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 pneumonia for three months the previous year which began in April 2019, and on one visit to A&E...
Daily Affirmations, by Huw
For years I’ve done simple affirmations each morning to help wire the foundation of my internal dialogue to one of thanks and wonderment. When I brush my teeth each morning, I’ve a visual reminder...
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 learnt very long, new words all you heard was "cancer". What do you do first? After getting home in a...
Wife/Carer/Companion
I was a partner when Neuroendocrine Cancer came into our lives. We had been together for 26 years, had talked about getting married, but just hadn’t gotten around to it. Finally in 2018 we tied the...
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 children, Adam aged five and Rhianne aged thirteen. I've been living with Neuroendocrine Cancer for over...
Pete, patient and fundraiser
Name: Pete Neuroendocrine Cancer Site: Pancreas with liver mets. I am cycling from North to South Devon in April 2022 to raise awareness of neuroendocrine cancer and funds for the very special...
Judy, Patient
Name: Judy Age: 69 Neuroendocrine Cancer site: Small Bowel and metastasis to the Liver Judy's Story: I was first diagnosed with Neuroendocrine Cancer in 2019 which came as a shock, as I had just...
Living With Watch & Wait (Long Term), by Martin
Introduction For me, Watch & Wait started in 2003. Watch & Wait is a common support protocol for Neuroendocrine Cancer patients across all types of Neuroendocrine primaries. My primary was...
PRRT, the Truth, by Barrie Dack
Asked if you would like to go on a clinical trial for PRRT (Peptide Receptor Radionuclide Therapy) and the immediate reaction is “what on earth is that” and “how dangerous is it”? The title is...
PODCASTS
Real life experiences, practical advice and everything in between. Whether you are diagnosed with Neuroendocrine Cancer or another rare or less common cancer, our podcast series cover topics from initial diagnosis, treatments and follow up, looking after your mental health and the professional perspectives from those involved in your care.
