Supporting the

Neuroendocrine Cancer Community

Neuroendocrine Cancer UK Ambassadors

Our Ambassadors play a crucial role at Neuroendocrine Cancer UK, contributing to, informing, and supporting our work through discussion and collaboration.

“Ambassadors are a little different from advocates, although the goals are the same; both try to get the right treatment to every patient at the right time. Advocates do this by raising awareness, gathering support, and delving into the intricacies of the processes to clear pathways to specialists and access to drugs.

An Ambassador is looking to build diplomatic relationships in the cancer community, establishing connections and finding ways to pick up and pass on lessons learned. They work in partnership with organisations like NICE and the NHS, pharmaceutical companies, advocates, patients, private healthcare providers, our own patient foundation charity, our community, and “NET” healthcare professionals as part of the same team.”

Mark Zwanziger

(Ambassador Emeritus 2019)

August 2019: Inaugural meeting of Ambassador Group.

Our Ambassadors:

  • Influence our website content by providing hints and tips for hospital visits, questions to ask, and sharing personal stories in a variety of formats such as stories, videos, and podcasts.
  • Raise awareness by sharing their experiences of living with neuroendocrine cancer.
  • Participate in and speak at medical conferences to ensure that the patient’s voice is heard loudly within the medical community.
  • Raise awareness of the impact of neuroendocrine cancer among non-healthcare professionals, such as the pharmaceutical industry.
  • Contribute to the continuing professional development of healthcare professionals.
  • Take part in advisory boards where appropriate and relevant to their special interests.
  • Attend and staff Neuroendocrine Cancer UK stands at conferences and events across the UK and Europe.
  • Have a presence at Neuroendocrine Cancer UK’s annual AGM.
  • Participate in or take the lead in Neuroendocrine Cancer UK events and activities.
  • Work with us to produce valuable awareness tools and review all resources.

Ambassador Activities and Achievements include

  • Natter facilitation / co-facilitation
  • Buddying and Peer Support
  • Co-Design and Co-Production of Patient Information Leaflets: Liver Transplantation programme, Carcinoid Heart Disease PIL, NELMAS study PIL.
  • Fundraising Activities: Glasgow Kiltwalk and Craig’s Firewalk Challenge

DISCLAIMER:
Neuroendocrine Cancer UK does not endorse or recommend 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 is required, please contact a medical professional or use our Helpline Number 0800 434 6476. Views are those of the Ambassadors only. Any verbal or written comments- 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 a Neuroendocrine Cancer UK Ambassador, please complete the application form below.

Neuroendocrine Cancer UK Ambassadors

Caroline

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 who is 5.

Up until my diagnosis in 2022 I had worked in Banking for 29 years and then most recently as a Finance Manager. My role was very demanding in an ever expanding company and I had to take the difficult decision to go on long term sick after trying to work with this condition for over a year and working in between courses of chemo.

Having neuroendocrine cancer is a full-time job and I had to prioritise this.

My journey to diagnosis was quite quick in some respects. From a visit to A&E in March 2022 to a planned Liver resection in April 2022 as it was originally thought I had HCC.

A MRI in Cardiff a week before surgery showed that in the month I was waiting for the surgery the tumour had spread into my portal vein and the operation was off the cards.

I was referred back to my original consultant who then informed me that after checking scans again whilst they thought that the cancer was contained in the liver, they had found something in the bowel . From there I had a Liver biopsy and Colonoscopy and after a month of waiting I was finally diagnosed with High grade stage 4 Neuroendocrine cancer.

They tell you not to Google, but I was after any information I could find. I joined various Facebook pages, followed people on Instagram with different stories and found Neuroendocrine Cancer UK and their Support page and found my lovely South Wales Natter group at Singleton Hospital in Swansea.

I attend the group most months and it is full of such positive people who are on various stages of treatment and timelines since being diagnosed.

Nikie Jervis, the CNS from Neuroendocrine Cancer UK also comes to our meetings and is a font of knowledge for us all.

My treatment to date has been 6 rounds of Capecitabine and Etoposide intravenously in 2022. This was harsh and I lost all my hair and was known as Nanny-No-Hair by my grandson who was just 3 at the time. The treatment gave me some stability,and I had a 3-month break.

In Jan 2023, I started on Cap-tem tablets. I did another 12 months on these with very few side effects and in June 2023, managed to go to Greece and marry my husband. We delayed chemo and had the most wonderful wedding with 40 of our family and friends in the same place we went to 6 years previously.

Last week, I went back to see my oncologist as there were queries on my latest scans. My case went to the MDT and after revisiting all my scans it was deemed that there was slight progression in my liver.

My oncologist has always been keen to get me onto targeted therapy as I have the NTRK gene mutation. It has shown excellent results but he doesn’t have anyone else on the treatment in Swansea. He thinks there are 2 in Cardiff. We are now going on a new journey together and I feel privileged to be given this chance.

The treatment is called Larotrectinib and it’s a tablet to be taken twice a day continuously.

I went for bloods recently, and I am now awaiting a start date so watch this space (as at March 2024).

So between appointments, 3 monthly scans, blood tests, Natter support meetings, other cancer groups, keeping family and friends up to date and so many other admin things, having neuroendocrine cancer is a full-time job.

I do try and live as normal a life as possible and last year managed to have four holidays abroad.

I always go to appointments with my oncologist with my little book of questions and never feel afraid to challenge him.

I need to live my life well with neuroendocrine cancer and will continue to go grab life wherever and whenever I can.

March 2024

Carolyn

My name is Carolyn Evans, and in August 2005, I was in hospital recovering from bowel surgery when a nurse came up to me and said: “Don’t stop eating your lunch, I’ve come to discuss your cancer with you”.   

 

CANCER??…That word hadn’t been mentioned to me before & never in my wildest dreams did I think I had the dreaded Big C. At that moment my world came crashing down. I was 49, a single parent with 2 daughters and I really thought it was the end. The nurse went on to tell me that I had a very rare cancer called ‘Carcinoid’ (very old terminology now) and they had only seen one other patient with this in the previous 5 years. 

 

Prior to my op, I had been having intermittent bouts of abdominal pains with diarrhoea, bloating & fatigue. I had consulted at least 7 different GPs over a few years, but they were dismissive and put these attacks down to IBS & stress. As I had gone through a very stressful time in my life, I initially thought that this could be feasible. After a particularly bad attack and another visit to a GP who prescribed more painkillers, I ended up in A&E, where I collapsed. This led to a stay in hospital having investigations, which showed I had a twisted bowel, so I had a right hemicolectomy to remove the affected part of the bowel. 

 

After I received the cancer diagnosis, the local team didn’t know what to do with me and suggested I had 6 months of continuous chemotherapy which they normally gave to bowel cancer patients. I later discovered that this was useless for NET patients (not to be confused here with NEC patients). 

 

During my weekly visits to the chemo ward, I felt very isolated. There were various support groups for the more common cancers and other patients seemed to have treatment plans, which I was lacking.  

 

It didn’t help that I had a cancer that no-one had heard of. My partner started to do some research online and came across Dr (now Prof) Martyn Caplin at The Royal Free London and after contacting him, he agreed to see me. There were no Centres of Excellence back then. This is when I met Cathy Bouvier, who became my first NET Nurse. I had to get my GP to do the referral and once I saw the team at the Royal Free London, my prognosis didn’t seem so bad.  

 

After 5 days of scans and every test necessary it appeared that I was low grade, stage 3. Then began the process of ‘Watch & Wait’. I was told that although there was no evidence of disease at that time, it was inevitable that it would come back so I would be monitored forevermore. A good thing. 

 

My routine scans and follow-ups continued uneventfully for 5-6 years until I was sent for a Gallium scan, which wasn’t available when I was first diagnosed.  

 

That showed up multiple liver mets, along with others dotted around my body. It was at that point I was started on monthly Lanreotide injections. Life continued quite normally with me working full-time. I had an admin job within the NHS, thinking I would like to give something back for all the treatment I had received. I also helped with my elderly mum and new granddaughter. Keeping busy meant I had very little time to dwell on my illness. 

 

By 2016, my tumours were progressing so my Lanreotide injections were increased to 3 weekly. This kept me relatively stable for a year or two and then it was recommended for me to have PRRT. I had 4 cycles on a clinical trial, as it had been withdrawn by NICE at that time, and I was treated as a private patient at The Royal Free. Once this had finished in 2019, I was closely monitored for 2 years. In 2020, Covid hit us & due to a re-structure at work, my job became more and more stressful…. something that, as a NET patient, I knew I didn’t need, so I decided to retire in 2021. 

 

I had great plans for my retirement. I was going to concentrate on getting fitter and by now I had 3 young granddaughters, so I planned to get more involved helping to look after them. 

 

However, during my first week of not working, I received an unexpected phone call from a doctor saying they had re-looked at my scans from the beginning of PRRT to the end of my monitoring period & there had been some progression so I would need more treatment.  

 

In 2022, I had another 2 cycles of PRRT, as I hadn’t used any of my NHS quota and I found cycles 5 & 6 a lot easier to tolerate.  

 

Just before Christmas I was told that this extra PRRT hadn’t worked so it was time to decide what treatment I should have next.  

 

In 2023, I had a course of radiotherapy on my spine as I now had many bone mets. CapTem & Everolimus were discussed, but I’m not an ideal candidate for either, so eventually it was decided to increase my Lanreotide injections to 2 weekly and that is where I am today, just hoping that the extra Lanreotide keeps my tumours stable. I long to hear that word again as I haven’t heard it for a while! 

 

When I was first diagnosed I never thought I would see 60, so when I did hit the magic number several years ago, I celebrated for a whole year. I have also seen both my daughters graduate and get good jobs, marry and have daughters of their own. I have travelled extensively and had 2 career changes. Things I would never thought possible back in August 2005, and a lot of it is due to the excellent care I have received. 

 

I think one of the reasons I have managed to deal with my illness is that I have always been busy and active and like to plan nice things to look forward to. I like socialising with family and friends, attending concerts and doing as many things as I can to keep my mind occupied.  

 

I have now made it my mission to support and offer advice for newly diagnosed patients. That is something I really wish I had had in those early days when I was struggling to cope. I have also attended focus groups for drug companies & Cancer Research UK. I am passionate about promoting awareness of NETS and am really looking forward to continuing this as an Ambassador for Neuroendocrine Cancer UK.  

March 2024 

 

Chrissie

I first became unwell in 1997, when I was just 24, and whilst pregnant with my daughter Amie.

After several months of tests, we discovered a tumour on the tail of my Pancreas. It was also secreting parathyroid hormone receptive peptides, causing my calcium levels to be very high. I presented with unusual symptoms of tooth\jaw ache causing me to have the appearance of having drunk 2 bottles of whiskey (according to my GP) and having no ability to carry out simple daily tasks. The tumour was removed along with my spleen, and I have had multiple recurrences and surgeries since then.

The most significant of these was a liver transplant nearly 17 years ago, after having a recurrence in my liver 5 years after the first tumour was removed. I’m told I was the last Neuroendocrine Cancer patient in the UK to be allowed to have a liver transplant. Hopefully, that may change in 2023 (link to liver news item).

The transplant has most definitely allowed me to witness my daughter finish school and university and begin a career in mental health. And this year, she’s off to Australia to spend time with her dad’s family for a year.

Even after all these years and many stays in hospital, and currently being classed as having no evidence of disease (NED), I continue to be monitored to keep me healthy and clear of disease. We get used to being incurable, but treatable.

I’ve educated myself and made sure I have a good understanding of all my treatments and blood results. But I don’t over-investigate and try to steer clear of Dr. Google. Personally, I find that overwhelms me.

I am always aware of what is happening with me and my body but I try to follow the path of ‘living with’ Neuroendocrine Cancer, as you would any other chronic condition.

What are your areas of expertise?

As an Ambassador I believe I can share my experience and help people learn ways to manage their diagnosis to try to live a full life with the disease. I have always continued to work full-time as a Senior Logistics Manager working in the Mobile Telecom industry, and I work from home permanently.

Tell us about you.

My interests are keeping fit (I had always done that) but during Covid I was isolated and bought a bike and started cycling inside, because I was not allowed to go out (at risk due to spleen removal). This has continued since lockdown and someone recently asked me what’s the most amazing thing I’ve done whilst living with Neuroendocrine Cancer for over 25 years…. I’d say it has to be last year, doing a cycle ride from London to Paris on my push bike! I was determined not to let cancer – or a liver transplant – stop me.

Debra

My name is Debra, 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.

Debra

Craig

Hi, my name is Craig Speirs and I have been living with Neuroendocrine Cancer for almost ten years now. It took me over three years to get this diagnosis and, in that time, I was called a hypochondriac, my symptoms were blamed on stress at work, and to be honest, I was made to feel like I was wasting the doctor’s time. Thankfully I decided to move to another GP practice and the service was completely different. On my first appointment, she talked at length about what had been happening to me over the last three years and made me feel like someone was now listening to me. She made me complete a 24-hour urine sample, took blood, and then some scans were booked until one day a few months later I was called up to a local hospital. Looking back now I can’t believe how calm I was, maybe the ignorance of youth as I was only 33 at the time. However, this all changed when they said to me “I’m sorry you have CANCER”.

I have a primary in my rectum with metastases to my liver and abdomen, I have severe carcinoid syndrome and carcinoid heart disease. Hedinger syndrome (carcinoid heart disease) is a rare valvular disease of the heart, it’s suspected that the cause is a release of vasoactive substances from the tumors and this causes valvular fibrosis. I presented with swollen ankles, shortness of breath, chest pain, weight gain, and increased flushing. I had surgery in 2016 to replace my tricuspid and pulmonary valve, to this day it was one of the most difficult periods of my life. Since then, I’ve had a second surgery to replace my valves, and unfortunately, the same thing happened again. This time I had a new procedure where they went in through an artery in my groin to replace the valves.

I wrote a blog for NCUK called ‘Fix my Broken Heart’ which explains all that happened, and my hope is that sharing this story helps others going through this.

What are your areas of expertise?

I spend my time running the Glasgow support group, this is not just a monthly meeting we also plan regular outings together (afternoon tea, a boat tour of Loch Lomond, and a Tina tribute night). I say, “Life is about making memories” and I feel the support groups should be no different. I also like to plan large fundraising events for NCUK (skydiving, Kilt walks, and currently a Firewalk). This has given me a purpose and something to put my energy into but still allows me time to look after my mental and physical health. Through my role as ambassador for NCUK I’ve been lucky enough to speak at a medical event UK INETS and also given the opportunity to speak to pharmaceutical companies. I believe that patients should have a voice and I’m grateful to NCUK for helping provide these opportunities.

Tell us about you.

Before cancer, I was an area manager for a security/facility company and before this, I was a serving soldier in the Army as a Royal Engineer. I decided that my role as an area manager was not fitting into life living with cancer so something had to change. I became a stay-at-home father, supporting the family and watching my children grow up. This has been so rewarding and has been one of the more positive aspects of this diagnosis, that I get to spend so much time with both my children and make lasting memories with them. I spend my spare time with friends and family, I’m never one to turn down a good BBQ or night out with friends. Time is the most valuable thing we have, once your time is up you can’t buy any more so spend it wisely with the people you love.

Kath

Diagnosed June 2015 at the age of 53; primary in the small bowel with metastasis to liver, peritoneal wall and some lymphs. I am not a candidate for surgery unless they have no choice due to the siting of my tumours, so I am classed as watch and wait. I call my tumours my illegal aliens as I did not give them permission to populate or breed. I believe though that I still have a full life to live, with plenty of new experiences and opportunities waiting for me along the way.

I am married with 4 children one grandchild and my diagnosis was received 6 weeks before he was born. Telling family and close friends is never easy, but that made it even harder, the plus side though was that I am determined to be part of his life for as long as I can. We also have a Chocolate Labrador called Buddy, he is a rescue, as mad as a box of frogs, the world’s biggest wimp and an utter joy to have around and is in fact one of our grandson’s biggest partners in crime!!

What are your areas of expertise?

Before my diagnosis I worked in IT for over 20 years, I did various roles but mainly business requirements. I enjoyed my job but decided to take early retirement as I was no longer able to work in the way I wanted to due to the unpredictability of my symptoms, I missed it though, especially my colleagues. So, I volunteered my services to NCUK as a way of giving back for all the help and support they have given, and continue to give since diagnosis.

As an ambassador for the charity, my interests lie in trying to make this cancer more visible outside of our community, and to support others affected by this disease in the best way I can. As part of my role with the charity I have worked with pharma, presented to healthcare professionals about what it is like to live with this cancer, as well as shared my experiences of treatments including PRRT. I have written about dealing with the emotional fall out of living with a long term cancer diagnosis, and a blog about my own personal journey of living with this on a day to day basis.

NCUK saved my sanity, the forums, the natters and new friends I have made help me to stay positive and keep going. So when the ambassador group was officially established in early 2020 I took on the role of Chair, which I did for the first 2 years, and stepped down at the beginning of 2023, and am now vice chair; we are a great team. Along with a couple of my other fellow ambassadors I also help to facilitate a local Natter group, and I am a patient representative for Neuroendocrine Cancer with West Midlands Cancer Alliance (WMCA), and when I can I write.

Tell us about you

Hobby wise, I love to cook, I am definitely what you would class as a feeder!! I also love to read, and sew, in lockdown, I learnt to quilt, but nothing fancy, just your basic blocks. I will occasionally knit, but nothing big, and am toying with the idea of macrame. I. like a new challenge!

One of my main joys is walking, but I can’t go as far as I used to, or as fast, and challenging routes are a now completely off the cards, and I miss that. In fact for me the way it has affected my walking is one of the hardest things to deal with, but walking poles help, along with lovely scenery, fresh air and wildlife to enjoy. Not perfect, but I’ll take it☺

Kate

The Big C isn’t for Cancer, it’s for Communication

My whole life changed in 2003, with a diagnosis of what was called back then, a Typical Lung Carcinoid.

The run up to my diagnosis was textbook. For the past three or four years, I’d suffered from repeated chest infections and wheezing. Then one Christmas, I contracted pneumonia. I was also being treated for asthma but not responding to inhalers (as I didn’t have asthma). Eventually, I coughed up blood and my GP sent me for a bronchoscopy.

Six weeks later, I had a lower left lobectomy to remove a 2cm tumour from my brochus. I was followed up for five years with chest x-rays, then discharged as no evidence of disease (NED). Medicine now knows X-rays are not the correct modality to follow-up lung neuroendocrine cancer (Lung NETS).

It took me a long time to get over the surgery. Back in 1998, I’d also had a total hysterectomy for endometriosis, and the aftermath of both surgeries absolutely floored me.

Over the following years, I went back and forth to my GP, complaining of fatigue and what felt like hormonal imbalance.

By 2009, fatigue increased, accompanied by intermittent bloating and flushing, so my GP adjusted my HRT. In 2010, with weight loss and right-sided upper abdominal pain, my GP sent me for a CT scan.  It was reported as ‘all clear’. 

In 2012, I found a swollen lymph node in my neck. My GP sent me for an ultrasound and I was told to ‘keep an eye on it’.

In 2013, I was back again, convinced the neck node had grown and still feeling fatigued with the addition of rather alarming palpitations for which there seemed no obvious explanation. So, we adjusted my HRT again.

Diagnosis

Then, in December 2015, a routine mammogram picked up what was thought to be a breast cancer. Two breast lumpectomies and a sentinel lymph node biopsy later, I was diagnosed with Triple Negative Breast Cancer and given a rather poor prognosis.  I expressly asked: could this be related to my Typical Lung Carcinoid and was firmly told No. 

But the tumour wasn’t a Triple Negative Breast Cancer. It was actually a metastases from my original lung neuroendocrine cancer. But we didn’t know this at that point. I went on to have 20 breast radiotherapies, but I refused chemotherapy. During all of this, I knew something wasn’t right, I just didn’t know what.

In 2016, I began to do a lot of research. Refusing chemotherapy had set alarm bells ringing with my local oncology team and during one of the follow-ups for my breast radiotherapies, I told the nurse about my swollen neck node, which was on the right. My so-called breast cancer was on the left.

She quickly booked a FDG-PET Scan, thinking the TNBC was spreading faster than expected; followed by a CT abdo spine and thorax. Then a liver MRI.

Second opinion

I requested a second opinion and was referred to The Christie NHS Foundation Trust in Manchester – one of the UK’s NET Centres of Excellence. They carried out a review of my medical history and discovered that the 2010 CT scan showed tumours already on my liver. If they had been TNBC, I wouldn’t be here now. They believed the tumours were lung neuroendocrine cancer metastases and sent me for a Gallium-68 Dotatate scan and a liver biopsy.

In January 2017, it was confirmed that I had extensive lung neuroendocrine cancer with mets to liver, bones, pancreas, adrenal and parathyroid glands and one kidney. No wonder I’d felt tired. I’d been living with an indolent cancer for years but, like many with this disease, had no idea.

I started monthly Somatostatin Analogues and remain on them today. 

But the single biggest task my new oncology team faced was restoring my trust and I credit Prof Was Mansoor with working with me to on this. https://www.neuroendocrinecancer.org.uk/neuroendocrine-cancer/neuroendocrine-cancer-by-primary-secondary-sites/lung/

One of the cancer treatment options open to me was Cap-Tem. Another was Everolimus. I didn’t want either (who does?). But my research kept flagging up a targeted treatment called Peptide Receptor Radionuclide Therapy (PRRT) which seemed to me, a better option.

However, it wasn’t and still isn’t (in 2023), approved or funded in the UK for Lung Neuroendocrine Cancer primaries. *

In the summer of 2017, I attended an NHS England conference in London with IEL, Advanced Accelerator Applications (AAA) Novartis as sponsors and met with other neuroendocrine cancer clinicians and regulators to raise the subject of access to PRRT for lung neuroendocrine cancer patients. I lobbied my oncology team at The Christie and in 2018, I met with the lead Interventional Radiologist and the Chair of the National Cancer Research Institute Neuroendocrine sub-group. They were incredibly supportive.

In 2019, I underwent PRRT at Guys & St Thomas’ Hospital, London.

At this time, I was invited to be a patient representative for the PET-CT Academy at The Christie. I also sat on the patient panel for Neuroendocrine Cancer UK, helping to formulate information for newly diagnosed lung neuroendocrine cancer patients.

Forty-two scans later, 3 cycles of PRRT, and at the time of writing, 82 Somatostatin Analogue injections, I remain stable and have a relatively good quality of life.

By comparison to TNBC, neuroendocrine cancer seemed “like a lottery win” according to my new oncologist.

Inevitably, I feel that there is more to be done to prevent others experiencing a challenging or delayed diagnosis.

Advocacy

In 2019, I took part in the International Neuroendocrine Cancer Alliance (INCA) Advocacy training course. I hope to be a voice for change, to use my skills to support others and to act as a bridge between clinicians and the patients diagnosed with this often misunderstood cancer.

I believe that patients have a responsibility to educate themselves and be their own best advocates – information empowers patients to make decisions.

But, if patients are unable to advocate, there should be a reliable and trustworthy resource to help them. For neuroendocrine cancer patients that resource is Neuroendocrine Cancer UK, a registered charity set up to support and inform patients and families from diagnosis (enabling access to the best care and treatment), whilst stimulating research, increasing awareness and influencing improvements in outcomes.

I now work as a Patient Support Co-ordinator for Neuroendocrine Cancer UK and, together with a colleague, run regular patient support groups, called ‘Natters.’ I also sit on the Research Committee for the International Neuroendocrine Cancer Alliance. And was a member of the Trial Steering Committee for the NET-02 Clinical Trial.

It’s hugely rewarding to be part of a team which works hard to support patients, lobbies policy makers and knows how to access clinical research and development information.

Above all, we encourage patients that it’s ok to have a voice. This is an area I feel is little understood as patients strive to be heard.

Patient Voice

There are relatively straightforward things a patient can do, like requesting copies of pathology reports, scan results or blood tests, and tracking them. Few patients do this or are aware of benefits. Many remain intimated by the whole experience of dealing with clinicians and some are reticent in becoming an active part of their own care team. 

Some patients may also not want to know this information. And like most medical terminology, it can be challenging – but a greater and supported awareness can lead to better treatment options.

There are good (productive) ways to tackle these constraints – and bad. The need for persuasive patient tenacity is hugely underestimated, and clinicians are often overwhelmed with a workload rarely appreciated by the patient. 

If a common ground can be found to work together to recognise this, much can be achieved.

Many patients are also overwhelmed by the complex (and often late) nature of their diagnosis. Often there is pressure from friends and family who cannot understand why (a) their loved one is unlikely to be cured, but may still live a good quality of life, and or (b) why they are not immediately on aggressive cancer treatments causing hair loss etc. Many patients are left struggling to understand what just happened – and this often comes after years of feeling unwell, and of trying to find a medical explanation. Overlay this with complicated treatment options, and we have a recipe for confusion and fear.

The patient-doctor relationship must be one of mutual respect.

Doctors have been carefully trained to handle patients – I believe patients can be educated to respectfully handle doctors. No one sets out to offer a poor experience.

After all, it is only with a mutually respectful and trusting partnership that the best outcomes will occur.

Last year, I wrote an article on the upcoming Clinical Trials that we think may make a real impact in the future (this view is changing all the time as more data from trials becomes available). CABINET is the perfect example of this, as it was ‘unblinded’ in August 2023 due to positive results. You can read more here:

https://www.neuroendocrinecancer.org.uk/uk-clinical-trials-that-matter/

I also gave a talk to a patient group on the importance of being involved in Clinical Trials and Research from the outset. If interested, you can listen again here:

 https://www.neuroendocrinecancer.org.uk/clinical-trials-research-the-importance-of-the-patients-perspective/

I would encourage any patient – newly diagnosed or living with Neuroendocrine Cancer for some time – to keep themselves up to date and to use this website for accurate and timely information throughout the year. The neuroendocrine cancer landscape is changing and as the UK’s only registered advocacy body for this, we’re working hard to make sure patients are included at every step.  

*That does not mean that some UK Centres of Excellence cannot access it. 

Relevant Qualifications:
Qualified Level 2 AIM Counsellor 
Level 3 Advanced Helplines
Reiki Level 3
Lisa

After many years of attending my GP with chest problems and being diagnosed with asthma which did not respond to treatment, I was finally diagnosed with neuroendocrine cancer of the lung in December 2021. I had a left pneumonectomy (removal of full lung) in March 2022 and was told at this stage that the cancer had spread to local lymph nodes also. After conducting my own research into the condition, I made a self-referral to The Christie Hospital in Manchester to ensure I was able to access the appropriate scans and follow-up care needed to manage my condition. I was given a Gallium scan in October 2022 which showed further spread to regional lymph nodes. Fortunately, subsequent scans have shown no progression and I am currently on a watch-and-wait treatment plan. This involves 3 monthly scans to ensure no growth and continued surveillance by the NET team, headed up by Prof Mansoor at The Christie.

What are your areas of expertise?

I am a lung neuroendocrine patient and have spent a lot of time educating myself about this condition. As a current Ph.D. student, I have a keen interest in research which helped me enormously when I was first diagnosed. I found that educating myself about a cancer that is not very well known and understood by the wider medical population, has empowered me to ensure I receive the most appropriate level of care for my situation, and I am passionate about supporting patients to feel empowered to self-advocate and receive the care they are entitled to. I have a keen interest in awareness raising around Lung NETs both with the general population and front-line medical staff such as GPs/asthma nurses/A&E staff.

Tell us about you.

I was a social worker for 15 years until undertaking specialist clinical training as a child psychotherapist. I currently work full-time for the NHS, in the Child and Adolescent Mental Health Service (CAMHS). I am also undertaking my PhD in child psychotherapy. This keeps me very busy, however, when I have free time, I enjoy spending it with my husband and two daughters, family, and friends, walking my dog, and practising yoga. I enjoy travelling and I am keen to resume this now that I feel fully recovered from my operation.

Marie

I was first diagnosed with neuroendocrine cancer in November 2020 after an emergency admission to the hospital with peritonitis due to acute diverticulosis. CT scans revealed a mass in my small bowel, close to the join with the large bowel, as well as a tear in the wall of my large bowel caused by diverticular disease. On further investigation, it appeared that the mass had also appeared on an earlier CT scan in 2016 but had been reported as unremarkable at the time. However, the mass had increased in size over the intervening 4 years. I had been suffering from recurrent bouts of vomiting and severe nausea accompanied by right-sided abdominal pain since 2014 but had been dismissed by various GPs and gastroenterologists as suffering from IBD/IBS. Blood tests taken whilst I was in hospital confirmed the diagnosis of neuroendocrine cancer and a Gallium scan undertaken in January 2021 confirmed regional lymph node and possible mesenteric involvement. I underwent bowel surgery in June 2021 to remove the primary and infected regional lymph nodes and, at the same time, to remove approximately 31cm of large bowel to halt the degeneration caused by diverticulosis. Since this time I have been under the care of Professor Weickert at University Hospital Coventry and Warwickshire and have been treated with a somatostatin analogue (Lanreotide) every 28 days with follow-up scans and blood tests. Fortunately, these have shown no signs of progression.

What are your areas of expertise?

I have a background in nursing and a degree in human biology and psychology and am interested in the human story aspect of this cancer and its impact on daily life and mental health. I have experienced the fears and anxieties that come with the diagnosis of neuroendocrine cancer at first hand and know what it is like to live with an invisible condition. Like many others, I have had to undertake my own research and have become my own advocate. When I have the time and energy, I try to educate local medical professionals in the known early signs and symptoms of neuroendocrine cancer with the aim of reducing the time from early symptoms to diagnosis.

Tell us about you.

I have been a school governance professional for the last 16 years working across a range of educational establishments. I currently work for two multi-academy trusts in two different educational authorities – which makes for an interesting life. I was widowed when my daughter was a toddler so, when I’m not working, I enjoy spending time with her and sharing her love of musical theatre. We are busy making lots of memories and regularly attend plays and musicals all over the country. I also enjoy quiet times reading a book, gardening and walking the dogs. My passion is genealogy and I enjoy sharing my family history finds with my wider family.

Maxine

I was diagnosed with neuroendocrine cancer in October 2015 after a scan and a series of misadventures including being assured that I had IBS by a busy consultant. 

My primary is in the small bowel and In January 2016 I was admitted for an emergency small bowel resection right hemicolectomy. I had seven tumours, one tumour was actually blocking my stomach.

My monthly Lanreotide injections successfully helped manage the hormones. But the side effects were awful. I shed lots of my hair, and my joints were badly affected.  A positive from my hair loss caused by my treatment was my pink hair.  My hairdresser advised against bleaching my very thin and fragile hair, so I was offered a more gentle hair colour process. I recalled a Macmillan advert where a cancer sufferer was offered a vibrant blue wig. In a moment of madness, I did consider blue, but instead opted for a dazzling bright pink! The hairdresser looked on bemused as I began to see, almost, a new me in the mirror. Being pink has certainly pushed me to have a more positive outlook on life.

Since my retirement as a Deputy Headteacher, I have been heavily involved in the u3a; The University of The Third Age. I run a Book Group, a Creative Writing Group and organise a Photography Group. As well as that time commitment, I love being out in the garden. We have a large garden and work hard to make sure it is as wildlife friendly as possible.

In late May 2020 we managed to set up our caravan across in the Lakes, all the while continuing to isolate. What a relief, somewhere to relax for us both, a bolt hole in between injections. Because, of course, the dratted neuroendocrine cancer reared its ugly head during the last months of 2020 and early January 2021. Had a miserable couple of months, flushing and coping with stomach and ongoing aches and pains.

I fill the calendar with u3a stuff, groups, meetings, activities. My meditation is gardening. Working outside, planting or cutting back, somehow the depression disappears. Sadly, the bad back reminds me to be a bit more careful. 

But I must acknowledge that it’s often an avoidance tactic so that I can forget about the cancer. It’s when I sit down quietly, all the sneaky cancer worries pop up and take over my mind, so I keep on running. Of course, it’s not real running, that metaphor is highly misleading. I’m blundering my way forward, coping with just being and also coping with the blessed cancer.

A pandemic plus was the online NET Natter meetings, not the same, but different. Angie, the Freeman CNS and Nikie, both there to talk to and offer support. How lucky we were. Facebook and Twitter have become more important, and a huge amount of information is now being shared online, again more reassurance for us NET patients. 

I began to feel more confident to start accessing the NCUK website. There are talks, people’s life stories and even more information.

In June 2021, I was invited to be a NCUK Ambassador. Suddenly my outlook has broadened and I’m learning more and more about different types of NETs, different treatments and how people are coping. 

I’ve published several articles for the NCUK, the latest on Being Stable.

I’ve also become Chair of the Ambassadors’ Group for 2023/24. It’s been a steep learning curve, but working with the Ambassadors’ team and the NCUK team has been hugely informative.

I now help host the face to face NET Natters at the Freeman Hospital in Newcastle supporting the CNS Angie Williamson. I also help host the zoom NET Natters on alternate months, We are a pretty lively bunch, always lots of chat and laughter and support for newly diagnosed patients as well.

Martin

2003 a “random” blood test result resulted in multiple scan and ‘scope investigations which failed to identify the cause. A second ultrasound scan located a gallstone. Due to the inconclusive investigations, the surgeon opted for a Whipple Style operation to remove the Gall Stone and Gall Bladder and at the same time take a look at the Pancreas. I started life as a “creonista” with a treatment plan of regular follow-up scans.
2009 the scans showed that the Tumours had grown, and this resulted in a second Whipple-style operation to remove the Pancreas in 2010. A biopsy identified the Tumours as Neuroendocrine Tumours. I was now an insulin-dependent diabetic. Again, there was no need for any other treatment, the routine of regular scans would continue.

2018 having previously had no evidence of reoccurrence the scans identified multiple (inoperable) Metastasis in the Liver. No operation was required this time but Somatuline Injections were added to the continuing treatment plan of regular scans.

What are your areas of expertise?

Although my journey started in 2003 it was not until 2019 that I first became aware of Neuroendocrine Cancer UK. There are a number of reasons for this: lack of social media, a late diagnosis that I had cancer, prioritisation of getting to grips with insulin dependency, knowing no one with Neuroendocrine Cancer, and life with no symptoms….

Having previously found I was not a “natural” fit within Pancreatic Cancer and Diabetes UK, it was a revelation to attend an event in Manchester where I could relate to the presentations and the issues faced by the other patients in attendance. My interest grew through attending a number of Natters even though the discussions always seemed to relate to other primaries and symptoms I have never experienced.

How am I helping NCUK?

  • 20 years plus of living with Neuroendocrine Cancer hopefully means I have experience that helps new patients, especially in areas such as:
    • understanding and living through what can be years of “treading water”,
    • the challenges of living with insulin dependency, creon, and somatuline.
  • My background in solutions design and project management, hopefully, means that I can assist with support and review activities that help keep the charity moving forward

Tell us about you.

The sudden appearance of the Liver Metastasis occurred just after we had taken the decision to accept redundancy and relocate from London. Whilst I had planned to return to work once the move was completed, the initial struggles with the Somatuline and Liver Mets, followed by the Covid lockdown, now mean that I’m happy(?) to say I’m Early Retired.

What does this mean? I walk the dogs, play walking football, assist NCUK when required, manage my Time In Range, and take part in low-level social media activism where comment is required in support of living without a pancreas.

I have two beautiful, successful daughters, Carys and Elisa, who have lived the majority of their lives under the shadow that results from 20-plus years of regular scans and consultations. Whilst they have always known I had health issues, we have never made a big thing of it and it has not stopped them from living life to the full. For example, whilst at university both spent a year in the Southern Hemisphere and my youngest currently works in South Korea.

My wife has stood shoulder to shoulder from the start. It’s not been easy for her:

  • going from having a weekend husband to a 24*7 husband
  • having to deal with post operation issues which I don’t remember
  • having to change post Whipple Operation dressings (3 times)
  • living with the “aromas” and “unflushables”
  • the blood sugar issues
  • the sudden mood swings
  • the day to day restrictions resulting due to:
    • from insulin pump changes
      drug delivery days
    • somatuline injection days
    • the scans, blood tests, consultant appointments;

She does get some payback as my Somatuline Injector. Some of you may know Nicky as she is a regular at the Friends and Family Natter.

Polly

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 quite what I had in mind. 

So how I got here…. I’m a partner to Mike who was diagnosed in 2014 – following some very vague symptoms – with a primary in the small bowel and extensive metastases. Major surgery, a long recovery, followed by ‘stability’, and monthly injections. However, curved balls do have a habit of coming along to interrupt the ‘new normal’. Including: ‘Just because you have one cancer doesn’t mean you can’t get another totally unrelated one (btw now clear)’ and ‘Take your eye off the ball and the metastases decide to go walk about into your heart muscles’.  

During the past 10 years there’s been, both physical and emotional, highs and lows and everything in between. We’re still together, supporting each other with the invaluable assistance of a working black lab called Elder. And back to ‘static and stable’ for now.  

My role in this…. It isn’t easy being a ‘carer’. There’s been a steep learning curve, I can probably now add the following onto my CV: erstwhile expert, advocate, nurse, secretary, chauffeur, all round pain in the backside.  

I’ve coped. I’ve hit rock bottom. I’ve experienced compassion fatigue. Finding my way initially to Maggie’s at Newcastle for weekly Tai Chi and an 8-week mindfulness course certainly helped.  

When Neuroendocrine Cancer UK set up a Friends and Family Facebook group and corresponding Natter meetings it was just what I needed. It’s a hugely supportive group of people who understand the complexities of what we face. It’s a ‘safe place’ where we can raise questions and cover topics with Lead CNS, Nikie Jervis, we might not otherwise be able to ask.  

I’m a great advocate that we, as carers, have a responsibility to our own wellbeing. If we do not take care of ourselves how can we hope to care for someone we love.  

So yes, sometimes you have to put yourself first. It’s ok to insist on ‘me time’. It’s strange to think that I now have a creative side I didn’t expect to have, watercolour painting, photography and philosophy are part of the new me. 

So why become an Ambassador?…..Perhaps the following best sums it up; The opportunity to represent Friends and Family within the Ambassador’s group, and the wider audience, with advocacy for the sometimes unspoken role of the carer. 

March 2024

  

 

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