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, 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...
Living with Watch & Wait, by Kath
A Long Time … Watching and Waiting I received my diagnosis of ‘Watch and Wait’ in June 2015, following surgery to try to remove a growth that had been found in my small intestine. The growth...
Paul
Name: Paul Age: 55 Neuroendocrine Cancer Site: Pancreas Paul's story: I was struggling with various tummy issues and upper abdomen problems throughout 2017 and 2018. I was backwards and forwards to...
Sally
Name: Sally Neuroendocrine Cancer Site: Caecum Sally's Story: After feeling so tired and struggling with hot flushes for many years, I went to see my doctor. I virtually collapsed on his desk. So we...
Debra
Debra (51). Diagnosed February 2021 Rare Rectal Primary with Liver Mets I recall visiting my GP in 2015. I felt increasingly tired and lethargic with joint pains, as well as recurring cramps in my...
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 me….. Many years later, I now in fact find myself on my own rollercoaster while accompanying my...
I’m Fine … no, really ….”
Reproduced with thanks to Alan, friend of award-winning advocate for the cancer community, Chris Lewis. How are you?” everyone asks, “I’m fine” “You are looking well” everyone says, “Yes, I’m fine”...
Recognising a hypo, by Martin
Well, that was an interesting weekend. For the last 2 years I’ve been managing my blood glucose based on the Keep in Range protocol which means that I should take action, in theory, before my blood...
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 pancreas. I had been off work sick for about 4 months beforehand. I received my first pension payment in...
Christina, Nurse Clinician
My name is Christina Nuttall and I'm one of the Nurse Clinicians at The Christie NHS Foundation Trust, Manchester. I have worked as a nurse clinician covering upper gastrointestinal (UGI),...
Peter’s vlog
As a hobby, I had been making short videos for my YouTube channel sharing my love of health, fitness, and the outdoors. However, I was diagnosed with a primary neuroendocrine tumour of my small...
Neuroendocrine Cancer and Sight Issues
Name: Mel Age: 74 Neuroendocrine Cancer Site: Primary in bowel, secondary liver initially Mel's Story My name is Mel and I have neuroendocrine cancer which was diagnosed in 2014, along with prostate...
Rajpreet, Supporter
Name: Ranjpreet Supporter: Father has oesophageal Neuroendocrine Cancer. Ranjpreet's Story: 💬 My father has been diagnosed with NET of the oesophagus which is rare and I’ve not heard or read much...
Always light within the shade
OUR EXPERIENCES OF LIVING WITH NEUROENDOCRINE CANCER My husband Ian was diagnosed almost exactly nine years ago with Neuroendocrine Cancer with liver metastases. He had the primary tumour of the...
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 the people around them. I have had firsthand experience of losing a close family member to cancer,...
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.
