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
PRRT, Two Years on, by Tricia
Name: Tricia Hospital: The Royal Free - When my Professor told me that he would be recommending PRRT (Peptide Receptor Radionuclide Therapy) as the next step in my treatment plan, I went...
Long Time Living with Lanreotide, by Carolyn
Name: Carolyn Neuroendocrine Cancer Site: Bowel and secondary liver mets Hospital: Royal Free Hospital, and local. - Carolyn's Story: Lanreotide. Love it or hate it, it’s been my friend and part of...
Coping with Sc-Anxiety by Kate Quirk
One way or another, a cancer diagnosis is life changing. And when you are living with cancer, there will always be periods of time when your mind runs away with you, especially down the road of...
My Life on Cap/Tem, by Terrie
Name: Terrie Neuroendocrine Cancer Site: Small Bowel with Liver Metastases Hospital: The Christie Hospital, Manchester - My name is Terrie, I’m 77 years old and have been married to David for 55...
Lung Biopsy, by Davinya
Name: Davinya Neuroendocrine Cancer Site: Lung Hospital: The Christie Hospital, Manchester - Learning about my Lungs I thought some of you would like to hear my experience of a lung biopsy in May...
Neurodivergence and Neuroendocrine Cancer
Neurodivergence is wider than autism, but this piece specifically refers to autism. - Autism is a spectrum disorder, so it is variable: no one with autism experiences being autistic in the same way,...
From Frightened to Enlightened, By Lesley
Name: Lesley Neuroendocrine Cancer Site: Bowel, Liver Hospital: Royal Free - My name is Lesley Porch and I currently work full-time as a secondary school support teacher and pastoral care...
Living with Stage 4 Neuroendocrine Cancer – Restoring Resilience, by Angela
Name: Angela Neuroendocrine Cancer Site: Ileal, small intestine with metastases in my liver, ovary, and pelvic nodes. Hospital: Southampton - Cancer has been part of my life for many years. Both...
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 stress and anxiety can be just as overwhelming. There have even been times when I’ve experienced both...
My Lottery Win, By Gary
Name: Gary Neuroendocrine Cancer Site: Small Bowel Neuroendocrine Tumours with Liver Metastases. Hospital: Southampton General Hospital - - My name is Gary and I was diagnosed in March 2023 with...
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 is Carolyn Evans, and in August 2005, I was in hospital recovering from bowel surgery when a nurse...
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 early retirement in my late 50s, it was to be a venture into the unknown but what followed was not...
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 old. I live in Port Talbot with my husband and daughter. I also have a son and a beautiful grandson...
PRRT Funding: Michelle’s Story
Name: Michelle Neuroendocrine Cancer Site: Primary: Adrenal gland with secondaries in lungs, liver, and lymph nodes behind the aorta - - Michelle's Story I have suffered for years with sweating,...
Newly Diagnosed, by Marie
Name: Marie Martin Neuroendocrine Cancer Site: Pancreatic Primary - I’d rather not be writing this story but it might help others - it's hard to find out anything straightforward about...
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.
