- Influencing website content including hints and tips for hospital visits and providing personal video stories.
- Raising awareness of their experience of living with Neuroendocrine Cancer.
- Sharing their experiences at medical conferences to ensure the patient voice is heard loudly within the medical community.
- Raising awareness of the impact of Neuroendocrine Cancer amongst non-healthcare professionals, for example; the pharmaceutical industry.
- Taking part in advisory boards when requested.
- Having a presence at NCUK’s annual AGM and staff meeting.
- Attending and manning stands at revenant conferences within the UK and Europe.
- Taking part in NCUK events.
- Producing valuable awareness tools
- Preparing the Excellence in Care Charter for Neuroendocrine Cancer.
If you would like to express your interest in becoming an NCUK Ambassador, then please complete the application form below.
Meet the NCUK Ambassador Team
Where to begin! I know most people that have neuroendocrine cancer can relate as our story’s can be long.
From 2012 I had ongoing issues with my stomach from pain after eating, constipation and real discomfort, which resulted in constant back and forth visits to my GP over a period of the next six years. I was referred for ultra sounds and had blood markers taken; but nothing showed up. My symptoms continued and the pain got worse, I had moved and was constantly seeing a locum GP, it was never the same person and that didn’t help matters. I was told I had chronic IBS and referred to a dietician where I was asked to follow an eating plan, this resulted in me eliminating dairy from my diet, to which I continue to do still to this day.
In April 2018 I took time off my work as I could not do it anymore, the pain and discomfort in my stomach and my back was unreal which resulted in me eventually breaking down in my doctor’s surgery in front of the new GP. She agreed that investigations needed to be done as I could not continue to go on this way. With a big sigh of relief and many tears I knew someone was finally listening, and I am thankful to this day to Dr. Keenan.
I tried to explain the symptoms that I had and it’s frustration as it was smacking me right in the face, everyday! Slowly over the years I had lost all my energy and realised in that moment in the doctors that something was taking everything I had to give away and I needed to find answers to what was going on. Dr Keenan got routine bloods taken again and put a referral in for a flexible sigmoidoscopy (scope of the bowel) and an upper gastrointestinal endoscopy (scope of the stomach).
In October of 2018 I had both scopes, and I was told the same day that everything on the inside looked great nothing to worry about however, the consultant had noticed something was pushing in from the outside of my stomach. He had said not to worry, and he would refer the information back to my GP.
My doctor contacted me in a matter of weeks and before I knew it, I had a CT scan, this was in November 2018. In December 2018 I got a call at work on the last day before the Christmas break from the Gastroenterology consultant’s secretary at Forthvalley hospital. She told me my CT scan showed a mass on the outside of my stomach and asked me to attend for a second CT scan on boxing day to rule out any further masses / tumours.
A few days after this my consultant called me and broke the news that two more tumours had been found: one in my chest and another in my neck. He said I needed to go for a biopsy of the tumour in my neck in January to allow them to test what the tumours were. Between January and February, I was sent for a MIBG scan and had to carry out a 24-hour urine sample test.
After a month of worry I was told on the 22nd of March 2019 that I have Neuroendocrine Cancer, with three known tumours and an unknown primary.
My world collapsed as I was unsure like many people what this meant, with support from Prof Reed at the Beatson in Glasgow and my super nurse Irene Wetherspoon I was told that the cancer that I have is sneaky. My bloods and urine still to this day show nothing, my tumours are small and not aggressive.
I am so grateful to this day to my Nurse Irene for pushing me to make contact with Neuroendocrine Cancer UK. I am relieved to meet other people that understand and are going through the same thing as me. I am delighted and excited to be working with the amazing staff and ambassadors at Neuroendocrine Cancer UK to raise awareness of this rare cancer.
My hope as an ambassador is to continue to raise awareness and support other people dealing with this cancer.
Please reach out, this is an amazing team at Neuroendocrine Cancer UK there is loads of support and help available.
I am Bethann Siviter, a nurse and nurse author who has been disabled due to spinal injury since 2006. I was previously a nurse consultant and lead nurse for a community trust, and am a qualified district nurse. I completed my nursing diploma at Birmingham City University, where I built up my campaigning expertise in various roles at the Royal College of Nursing (RCN), Association of Nursing Students (ANS), National Executive, and the RCN Council.
I was also on the Nursing an Midwifery Council’s Professional Practice Committee, the Department of Health’s Essence of Care working party, and the Older People’s Expert Nursing group.
I originally trained as a nurse in the United States, then moved to the UK 20 years ago.
I’m married and live just outside Birmingham. I am always accompanied by my Canine Partner Assistance Dog, Taska.
I write about the impact of developing a disability and returning to work after long illness, as well as the importance of healthcare assistants, and I contribute to the RCN’s ‘Statement of Principles on Nurse Education’.
For me, what’s important and what I can speak about, that others might not be as able to, is the value of helping people accept their changed health status, about how the medical model isolated me and others, and how a small slow cancer might not mean much to them but to me -after three years of increasingly difficult symptoms no one cared about – it’s a very big deal indeed.
Seeing me as a person means being expert enough to be adaptable and responsive, and to involve me in my care, its treatment, and diagnosis.
We need practitioners who not only hold excellent clinical skills, but human skills as well.
Over the last 6 years, I have gone through many treatment options in an attempt to control my cancer with mixed results. I started with Lanreotide injections, 4 Hepatic artery embolizations (waiting on 5th), part of the TALENT study which used the drug Lenvatanib and 4 rounds of PRRT. I recently had open-heart surgery to replace my Tricuspid and Pulmonary valves and I’m waiting on surgery to replace these after only 11 months.
My previous career I served in the Royal Engineer in the Army and most recently I was an Area Manager for a Security company. Unfortunately at this time, I’m not able to work so spend my time as a stay at home daddy and enjoying watching my 2 children grow. I decided to become an Ambassador for Neuroendocrine Cancer UK as I believe that we all have an important part to play in raising awareness and the patient voice is a powerful tool.
John runs his own business as an independent Chartered Financial Planner and now offers free financial guidance to families affected by neuroendocrine cancer. He, and his wife Lee, have been running the South East Natter Group since 2012. Out of work and charity activities, John loves reading, fly-fishing, his family including two Jack-a-poos and his beloved Leeds United (well he can’t be completely happy then)!
I am classed as a watch and wait due to the siting of my primary, and my previous medical history indicates that I may have been living with this for 7-10 years prior to diagnosis. Due to progression in late 2017, which was having a big impact on my quality of life I underwent PRRT treatment between July 2018 and January 2019. I also write a blog, charting my journey.
After several years of chest infections, being treated for asthma, pneumonia and finally coughing up blood, Kate was diagnosed in 2003, with what was previously known as a Typical Carcinoid tumour of the lung. She underwent a lower left lobectomy, and was followed up for 5 years and then discharged as NED (no evidence of disease).
In 2015, a routine mammogram picked up what was thought to be a breast cancer but was, in fact, a breast neuroendocrine cancer metastases. A change of hospital and several scans later, Kate was diagnosed with Lung Neuroendocrine Cancer and is now under the marvellous care of The Christie Manchester, where she is also a Patient Rep for the PET-CT Academy. Kate has completed 3 cycles of PRRT (Peptide Receptor Radionuclide Therapy) at Guy’s & St Thomas’ Hospital, London. She was also one of the patient contributors in the production of our New NCUK Lung Handbook. She represented NCUK on the International Neuroendocrine Cancer Alliance (INCA) Boot Camp and is a firm believer that patients should have a seat at the table to be a true partner with healthcare professionals, sharing decisions about care. Kate’s specialist area of interest is clinical research and development for all things Lung Neuroendocrine-related, including the mechanisms of accessing diagnostics and new drugs.
Oh, and Kate has never smoked.
In 2011 my health declined. I have a typical history of endless appointments and misdiagnosis. After three years I finally progressed to a confirmation that I had Neuroendocrine cancer and required major surgical intervention in 2014. Further discoveries and secondary disease were located just one year later. It was then I set to work to discover the realness of this disease and its impact. This rollercoaster led me to the Neuroendocrine Patient Foundation, now the NCUK. The desperation and isolation I felt as a result of the differing responses by medical professionals to this sneaky disease led me to investigate the options of Peer Support as a survival mechanism.
Roll on 8 years I coordinate a NET Natter Group in Plymouth, serving the Plymouth City and surrounding areas into Cornwall. I am passionate about ensuring others be it patients, carers or supporters of this disease to have access to whatever level of support service that fits their purpose. I am very much an advocate for patient voice and enjoy the benefits of my peer’s support as much as I choose to offer time to others. One of my very favourite quotes that I live by is ‘Maybe I can’t stop the downpour, but I can join you for a walk in the rain’.
Hi I’m Martin, 57 years old, long-term Pancreatic Neuroendocrine patient.
Joining the Neuroendocrine Patient Ambassador Team means that I will have a more concrete platform to share my historic and future experiences (watch out for future Blogs / Vlogs) whilst utilising the consultancy skills built up over 30 years, to assist with the various reviews and projects planned for the team.
Personally, as I am no longer working, I’ve been missing a sense of purpose and becoming a Patient Ambassador brings with it an opportunity to make a difference and to add some value.
I’m Maxine Patterson and seventy-four years old. I was a deputy headteacher, but my first love was teaching English. I really enjoyed the connection with young people and helping them begin their adult lives.
When I retired, I became involved in the U3A in my local area, establishing two Book Groups; a Creative Writing Group and a Photography Group. During the pandemic all the groups have continued remotely using zoom.
I’ve always had “tummy” problems with ongoing investigations that stretched over more than twenty years. Things got serious during my final years teaching and my retirement. In 2015 there were endless visits to the doctor where I asked repeatedly was going to the toilet twelve times during the day actually normal? Patient and kind and completely out of his depth, he suggested the FOD map diet and referred me for tests. The specialist was positive that I had IBS and that I just had to follow the diet. Just as a precaution I was sent for yet another colonoscopy. They couldn’t insert the camera, so I was sent for a scan which identified the tumours, and I was referred to the Freeman MDT in Newcastle.
I had no idea where or what the tumours were, but after a biopsy at North Tees Hospital it was confirmed on the phone that I had cancer. Luckily, the Consultant diabetes and endocrinologist had trained under the consultant at the Freeman and was able to explain a little about neuroendocrine cancer. He was so hesitant and unsure that I realised something was different and immediately got a pen and paper and wrote down everything he said. That became the start of my neuroendocrine journey and my attempt to maintain some control over my life.
In January 2016 I had to have an emergency small bowel resection right hemicolectomy. I had no idea what that meant although the letters from the hospital used all the technical language and “assured me that they had explained it all very clearly.”
My G.P., a very kind and caring person knew nothing about NETs, just didn’t have the time to research. Any issues I raised were met with; “ask your specialist nurse.” In desperation I used the internet and found the Royal Free Hospital website’ Ronny Allen’s site and finally the NCUK website.
I am on monthly Sandostatin LAR (Octreotide) injections and take colesevelam 3 times daily. I find life has to be taken day by day, planning ahead allows me to enjoy the good days and allow space for rest on the not so good days.
My name is Sally Jenkins and I am a retired computer systems analyst and lecturer living in South Wales.
I was diagnosed with metastatic small bowel NETS in 2009 after life-saving emergency surgery for mesenteric ischaemia caused by the NETS.
Before diagnosis I had two gruelling years of ‘revolving doors ’ visits to different medics, without result.
After diagnosis it still took several years of struggle with badly managed symptoms before a NET specialist took over my management and transformed my Quality of Life.
Now, eleven years on from diagnosis and receiving superb care from a NET Centre of Excellence I am still battling to adjust to the ever-changing physical and mental challenges of living with Neuroendocrine Cancer.
I seize any opportunity to raise awareness of this Cinderella cancer and am delighted to be a patient ambassador for Neuroendocrine Cancer UK. My specialist interest is the MIND the Gap programme. I am a critical friend to NHS Wales and I value fair play. I enjoy yoga and spending time with friends and family, including dogs and cats!
I was diagnosed in October 2018 (aged 35) with two Pancreatic Neuroendocrine tumours (one in head and one in tail, both less than 1cm) Stage 1, Grade 1 and Ki67 <2%. This, however, is not the start of my journey.
In July 2012 I was diagnosed with Multiple Endocrine Neoplasia Type 1 (MEN Type 1) through a genetic test at The Queen Elizabeth Hospital, Birmingham. This is a hereditary condition associated with tumours of the endocrine (hormone producing) glands. The most common tumours seen in MEN Type 1 involve the parathyroid gland, the pancreas, and pituitary gland, commonly referred to as the 3P’s.
I was now under an Endocrinologist at the QE Birmingham and would be for the rest of my life, with annual blood tests, CT’s and MRI’s. For the first few years my health was fine. Then in 2016, I started to suffer from extreme acid reflux, so I moved on to a PPI.
The first PPI did not agree with me, so I moved onto a second. At first this worked, however the acid reflux and serve heart burn and vomiting returned. This was so severe that I underwent an endoscopy and was diagnosed as having a severe oesophageal ulceration. My PPI was then increased from one a day to two a day.
At the same time my annual blood tests had shown that my calcium levels had been increasing. Therefore, I was off to see another medical team. This resulted in nuclear medicine scans on my parathyroids. Two of which were glowing so in November 2017 these were removed, and I spent three days in the QE Birmingham.
During 2018 I suffered from extreme sickness and diarrhoea. This resulted in extreme dehydration. I was taken to hospital five times in seven months by ambulance, where I was rehydrated and sent on my way. As you know, this is not normal and the story moves towards NETs. So, it just so happened that as a spin off, of MEN Type 1 you are at higher risk of developing NETs (which I didn’t know).
I was in regular communication with my endo at the QE, at this time, saying “this can’t be normal”, which he agreed it wasn’t. He sent me for MR’s / CT’s and something was seen on my pancreas.
So, another EUS with ultrasound was ordered (by this point I was pretty anxious and had to be sedated). Then in October 2018, I received a letter informing me I have two pNET’s at either end of my pancreas.
In December 2018, I returned to the QE Birmingham to see the NET team for the first time (of which my endo is part of) after the MDT meeting. I started on 60mg Lanreotide every 28 days supported by Creon with every meal (don’t forget still on the PPI). I did the second injection at the QE under the supervision of the NET nurses. I did the third one at home in February 2019 and have been doing them at home ever since.
Since December 2018 I am a ‘watch and wait’ or as I like to describe it a ‘ticking time bomb’. I’m fully expecting a total pancreatectomy when either one or both of the tumours reaches 2cm.
I feel lucky, that up until this moment in time I haven’t had too many procedures.
I’m 38, husband to Amy, father to three girls Lily (10), Penny (7) and Evie (4). I was a Senior Vice Principal in secondary education but retired on medical grounds and deemed to ill to be able to gain meaningful employment again, in other words, I’m retired. I’m a stay-at-home dad.
Look closely, look closely, . . . what do you see? Blood values and scans? Or do you see ME? I’m more than my cancer, more than my cells. There is more to my life than my DOTA scan tells… Help me to live, help me to heal. See not only my body…. Learn – see – how I feel.
by Bethann Siviter