NEUROENDOCRINE CANCER UK
The NCUK was co-founded by patients for patients. Our ambassadors work with us on a variety of projects maintaining the patient-centric ethos that underpins everything we do.
- 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.
Neuroendocrine Cancer UK does not endorse or recommend any commercial products, processes or services. Any correspondence undertaken by any Ambassadors representing Neuroendocrine Cancer UK does not replace medical advice in any way. If medical advice required, please contact a medical professional or use our Helpline Number 0800 434 6476. Views are those of the Ambassadors only. Any comments – either verbal or written – cannot be construed as ‘advice’ or endorsement.
Neuroendocrine Cancer UK also cannot authorise the use of copyrighted materials published on linked, external websites. Users must request authorisation from the sponsors of those websites and give credit if named.
BECOME AN AMBASSADOR
If you would like to express your interest in becoming an NCUK Ambassador, then please complete the application form below.
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.
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.
My name is Craig Speirs I’m 39 yrs old, I’m a husband and father to 2 beautiful children Adam 3 and Rhianne 11. I’ve been living with Net Cancer for 6 years. My primary is in my rectum with mets to my liver and abdomen. I have both severe Carcinoid Syndrome and Carcinoid heart disease.
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.
My name is Debra Houston, I’m 51, married with 2 gorgeous sons, and work as a Digital Adoption Specialist for Marks & Spencer. In February 2021 I was diagnosed with Neuroendocrine Cancer with a Rectal Primary. Now, twelve months later, I’m delighted to have been invited to become one of Neuroendocrine Cancer UK’s Ambassadors.
This is my story:
After years of discomfort, in 2019, I was referred to a Bladder and Bowel specialist who said I was having ‘Pelvic organ collapse’. He explained my rectum was pushing down on my pelvic area causing prolapse and the cramps I was experiencing.
Soon after this appointment, I started to notice red specs in my stools so made another appointment with the GP who asked me to bring in a stool sample. They confirmed what I had suspected – it was blood.
In 2020, I was booked in for a Colonoscopy. This was not the start of the new year I wanted but I was pleased it had been arranged quickly. I watched the whole procedure on the screen. The camera passed slowly up and down my colon. The doctor explained beforehand that if she found anything that might be causing my symptoms, it could be removed safely.
Then I saw her poking and sniping at a lump that looked to me like a pink mushroom. She explained that she had found ‘a tumour-like growth’ in my rectum and that she thought it best to take a sample before attempting to remove it. She put the test tube in the sample bag with URGENT marked all over it in red bold writing. This was my first ‘red flag’ that I should have paid attention to.
I came home and a couple of hours later, I got a call from a Macmillan Navigator nurse. This was my second ‘red flag’ that I did not acknowledge: why a Macmillan nurse was calling me when I only just had the procedure? She started to explain what would happen in the next few weeks.
I wrote all the information down and can remember her asking me several times if I understood. I read back all the information she had given me, but thinking back now, I remember being calm and emotionless, and she obviously thought I didn’t understand what she was explaining. In hindsight I think I was still quite sedated from the procedure – I was numb in thought as well as body.
I needed an MRI, a CT scan and more blood test in the weeks that followed.
But 22 February 2020 is a date etched in my memory forever.
I met with the Surgeon Specialist and Navigator nurse who proceeded to give me the results of my test. The growth that was discovered in my rectum was in fact cancerous.
I managed to ask one question: is it treatable? He answered yes. That is all I wanted to hear.
I needed more scans and a biopsy to identify the type of cancer I had. After another intense few weeks with two more scans and waiting for test results my prognosis was confirmed.
I had Neuroendocrine Cancer of the Rectum and it had metastasised to my liver, which was when all the worry and concern that I was keeping a bay hit me. While it was all being explained to me …. the only words that registered were ‘Stage 4 Cancer,’ neuro something, rare cancer, not curable’.
The specialist nurse gave me the details of Neuroendocrine Cancer UK (NCUK).
Overwhelmed with fear but trying not to show it, I started to read the information on the Neuroendocrine Cancer UK website, learning as much as I could.
I wanted to be prepared, informed and confident in understanding what was happening to me. Then I discovered – the Natter Support groups on the NCUK site. I signed up for my local group with London Hammersmith. My sons and husband attended the first meeting with me, and we were all made to feel so welcome and reassured. I had so many questions but was scared and shy to ask. The following couple of sessions were quite difficult. I was an emotional wreck, but it felt right to let go in this space. I started attending other sessions around the country and began feeling a different kind of support. I had found somewhere to share my fears and emotions outside of my immediate support network.
My family and friends were a great support, but I also felt like I had to support their worries and concerns by being constantly positive. I did not have to be that way in the Natter groups. I was attending meetings at least once a week during the summer months and with the information on the website and the conversations that I was having with all the new people that I was meeting, I started to feel in control with more acceptance of my condition.
Twelve months after being diagnosed, I am now the best advocate for myself. The mets in my liver are inoperable, but treatable. The tumour in my rectum is best left alone for now, as surgery could be more life changing than I need it to be.
I started Lanreotide monthly injections in March 2021, and at the time thought this was the only treatment available.
I later learned this was not the case (thanks to the Natters). After 3 Lanreotide injections, I was recommended for PRRT (Peptide Receptor Radionuclide Therapy) – a targeted radiotherapy treatment that delivers radiation to specifically targeted cancer cells, with a minimal effect on healthy cells, and to possibly shrink some tumours too. I’ve had all 4 cycles.
For now, things look good. I’ve been told there are signs of some shrinkage, but I still have a long road ahead of me.
It has been a rollercoaster of emotions, but I am mentally in control of my cancer now. The information on the NCUK website, Nikki, Kate, my fellow Natter participants, family, and friends, along with my spiritual beliefs have got me to this point.
I have cried, laughed, felt sad and happy. But always feeling supported. I know that this cancer is something I can live with, and I plan to continue to try and live my best life.
I hope by sharing some of my experiences it will help to make someone else’s pathway feel more positive… just like the stories and invaluable information shared on NCUK and Natter groups have helped me.
John was diagnosed with a neuroendocrine cancer in his duodenum in 2009. The cancer had also spread to a couple of lymph nodes. After an unsuccessful operation to remove the tumour and too weak to continue chemotherapy, John was given just two years to live. Luckily though the surgeon had another attempt at removing the tumour and several lymph nodes in 2011 via the Whipples Procedure with the operation being successful.
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 was diagnosed in June 2015 at the age of 53 with grade 2 stage 4 Neuroendocrine Cancer, my primary is in the mesentery layer of my small intestine, and it is also scattered across my liver, it is on the peritoneal wall and in some lymphs. It had taken me a long time with a lot of twists in the road to finally get an answer to the variety of health issues I had had over the years.
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.
I am a 58-year-old married lady and mother to three superb people and have also had the privilege of being part of raising a total of five children. I have 5 adorable grandchildren. I also manage to work full time in secondary education. I thrive on volunteering to rally to for change. My roles as a school governor and chair of the PTA simply feed a habit of making things better for others.
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 Maria 60 year old widowed mum of one daughter. I was diagnosed with neuroendocrine cancer after a primary tumour was found in my small bowel in November 2020 following an emergency hospital admission for peritonitis. In June 2021 I underwent surgery to remove the diseased part of my large bowel and the part of my small bowel containing the primary tumour, where it was found that I actually had two small tumours (one hiding behind the other). Prior to diagnosis I had a 6 year history of various abdominal problems which were associated with the total abdominal hysterectomy I underwent in May 2015, subsequent menopause symptoms, and a previous diagnosis of IBS. From 2017 I underwent two upper GI endoscopies and a colonoscopy, plus various CT scans with contrast, ultrasounds, blood tests etc; which were all unremarkable. However, I was continuing to suffer extremely debilitating abdominal pains, often resulting in vomiting, and I was beginning to lose the ability to digest my food properly. The result of all this was that I became chronically fatigued and forgetful and spent vast sums of money at the dentist trying to preserve my teeth which were being eaten away by stomach acid. Finally, I met a new GP in late 2018, who reviewed my records and really listened, and he referred me to a gastroenterologist. Unfortunately, Covid 19 got in the way and I was not diagnosed with severe bile acid malabsorption until around October 2020. I hoped that this was an end to my problems but then I suffered a bout of acute diverticulitis, resulting in peritonitis, which led to the emergency hospital admission and cancer diagnosis. I’m currently being stabilised with 120mg Lanreotide injections every 28 days, which I manage myself at home, and regular CT scans and blood tests.
Post-surgery I made the decision to semi-retire in order to ease up on my workload and buy back some time cope with the vagaries of neuroendocrine cancer. However, I’m not ready to fully retire yet! Being semi-retired has allowed me to focus more on the things that matter to me and one of those things is the desire to spread the word about neuroendocrine cancer and the work of NCUK. I’m hoping that my previous NHS experience and medical background will be of value to the charity. I have a particular interest in genetics and the role that genes play in heritable medical conditions as I have several first degree relatives who were diagnosed with rare cancers and also have a diagnosis of Ehlers Danlos Syndrome. I’m a firm believer that the patient’s lived experience should be heard and should carry equal weight in the decision-making tools of healthcare professionals.
When I’m not working or volunteering I’m a keen amateur genealogist, a dabbling artist, avid reader and pottering gardener. Oh, and I should add, I’m mad about Yorkshire!
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.