I’ve got a confession to make, I’ve never done this before, you know, have cancer. I always thought that was something that happened to other people.

And yet here I am, trying to find a way to deal with my new normal, which isn’t normal at all. In the meantime I’m minus a spleen and half a pancreas; I wouldn’t recommend it as a weight loss program.

Finding a way is a daily activity, daunting at first, but with the right support it gets a little easier. Then you get a bit giddy and agree to be an NCUK Ambassador.

I’ve been on a journey, I got a bit lost along the way, but I’m on the right track now. NCUK believe that through my experiences, I can help others, and I’d like to do that.

Rather than list the twists and turns here, have a look at these episodes on YouTube, there’s less reading and you can make a cup of tea while you’re listening. I’ll add more over time.

Al,
Proud to be a husband, dad, son, brother, pet fanatic and NCUK Ambassador.

Select here to read Alan’s story.

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

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

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.

Name: Chris

Neuroendocrine Cancer Site: Lung

Hospital: Royal Free

We’re delighted to welcome Chris from Wiltshire, who has just joined our Neuroendocrine Cancer UK Ambassador team. Chris was diagnosed in February 2021 by a private lung specialist at the Spire Bristol Hospital, with a primary in his lung known as an Atypical Carcinoid. In terms of Lung NET classifications (sometimes called pulmonary NETS or bronchial NETS), there are 2 main classifications: TC (Typical Carcinoid) and AC (Atypical Carcinoid). These are differentiated by their KI67% score and Chris’s was Ki67 <5% … so AC.

–

Chris’s Story

Initial Diagnosis and Chemotherapy

I had a course of chemotherapy quite quickly after diagnosis, doing 4 out of 6 cycles of Carboplatin and Streptozocin but it was unsuccessful. I asked for a second opinion at The Royal Free London but they didn’t think surgery was feasible. Luckily, one of the Consultant Thoracic surgeons – Dr Igor Saftic at Bristol Royal Infirmary – agreed to try to remove my main tumour and I credit him with saving my life. There’s always more than one way to approach cancer, in my experience.

Lung Surgery and Complications

In Sept 2021 I had a right lung pneumonectomy followed by 5 weeks in the hospital and almost a month in ICU (intensive care unit) for a herniation of the heart, pneumonia, and an infection.

Discovery of Bone Metastases

In August 2022, I started to get some back pain and was referred for an MRI Spine. Then an FDG-PET scan showed multiple sites of bone metastases including my spine, hips, shoulder, left leg, and the base of my skull.

The Importance of Self-Advocacy

This is where I believe self-advocacy comes in. At this point, my local cancer team hadn’t consulted with The Royal Free London NET Centre of Excellence and as a result, told me that only radiotherapy to control pain was an option for me … and that my prognosis was around 12 months.

Taking Charge of My Treatment

Naturally, I couldn’t accept this. I rang The Royal Free London myself and spoke with Prof Caplin, head of the team. We agreed to try both Lanreotide monthly injections and Everolimus, an oral targeted therapy. I didn’t tolerate Lanreotide very well so came off it – but I’ve tolerated Everolimus well so far and at the time of writing (August 2024) I remain on it.

Living Day to Day

Today, I still take some strong opioids for pain relief but I’m living a fairly normal life.

My employer has been fantastic. They understand I have good days and bad days, and hospital appointments – and being able to work keeps me mentally strong.

Life and Passions

I used to be a keen footballer and cricketer but these days I enjoy watching rather than playing – but that doesn’t stop me from fundraising at these events too. I also enjoy exploring our beautiful coastline and countryside with my partner, Gemma, and our dog, Arnold. Being in nature definitely helps me.

Becoming an Ambassador

So why be an Ambassador? Well, I find it incredible that our NHS still has no formal recognised pathway for neuroendocrine cancer patients. There should be a structured approach to diagnosis, treatment, and follow-up in place, as there are with other, more widely recognised cancers. In my view, it’s only earlier diagnoses that are going to make a difference to us – and we definitely need the ‘age box’ removed from the tick list. I was 34 and although I ticked all the other boxes for a cancer referral, it didn’t happen because I was ‘an under 40 normally fit and healthy person.’ I’m looking forward to helping try to change this.

Chris

19.8.24

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

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.

My name is Lesley Porch and I currently work full-time as a secondary school support teacher and pastoral care supervisor. As far back as 1995, I can, unfortunately, recall feeling unheard by my GP and I was then diagnosed with post-natal depression and IBS following frequent difficult gastric symptoms.

Over the years, I have learned to cope with terrible fatigue, and to manage my symptoms.

But by 2010, I felt unwell. My weight was yo-yoing, and I experienced several episodes of unrelenting pain which required intervention by paramedics – yet still raised no alarms with my GP.

By 2011 when my mother was terminally ill, the GP attributed my physical symptoms to stress and poor diet.

In April 2012 I went on the holiday of a lifetime to Africa. But returned in dire straits with my health and was once again, back at my GP.

My GP believed I still had depression and suggested that I was also focusing too intently on my IBS. My health issues were also now attributable to visiting a country with a high risk of contamination of various diseases. I lost 3 stone but was dismissed by my local Gastroenterology team with an array of diet sheets and Loperamide on repeat – but this did not relieve my symptoms of diarrhoea.

Periodically, I began to collapse. The joyful graphics of the situation – with endless talks of poo and pain to my GP, and my poor family. My symptoms were persistently whispering into my busy world when I was desperately trying to get on with being ‘busy and efficient’ in my career and as a working Mum.

In March 2014, following a coincidental collapse in front of my GP, I was admitted for urgent medical assessment and seen by a different Consultant. He asked a question that changed everything:

“What do you think is wrong?”

I plucked up my courage (or it may’ve been the morphine) and replied:

“I think I have bowel cancer.”

He replied: “Right, let’s get on with the appropriate tests.” And he did. CT scans and biopsies were performed and 8 weeks later in May 2014, I had major surgery.

I was diagnosed with a neuroendocrine tumour and was admitted for a right hemi-colectomy.

In June 2014, the histology report confirmed that several lymph nodes were also involved – this neuroendocrine cancer with all its stories of … ‘not really being cancer, just carcinoid’… had now invaded other areas of my body, too.

There was a little good news though. My surgeon was able to remove my primary tumour with clear margins. And I was put on a formal ‘Watch & Wait’ protocol.

It had been evident prior to my surgery in 2014 that Carcinoid Syndrome was also part of my diagnosis and careful plans had been made to protect me during surgery, but thereafter, no further regard for it was given. After continual self-advocacy, the Gastro team agreed to perform scans and checks on my heart which thankfully concluded there was no damage. But I continually ask for monitoring, even now.

Unfortunately, by 2015 I began to feel that there was still something not right.

I was told to be more positive and grateful that no further treatment or investigations were planned.

By now, I was wiser and a little more determined. I had found Neuroendocrine Cancer UK and attended a face-to-face NET ‘Natter’ in Bristol.

I had taken almost a year off work, but my recovery was frustratingly slow.

That time allowed me to read and research other stories and I became familiar with the terminology used. I understood more about histology (pathology), and I questioned everything.

In 2015, I sought a second opinion from The Royal Free NET Centre of Excellence and have never looked back. It brings me great peace of mind.

This disease has cost me more than just a piece of old bowel. It has destroyed my inner peace, and at times, my self worth. It has diminished my career in that it was seriously interrupted. I felt I had to take a lesser role just to be able to manage working at all.

Eventually, in a bout of consultations through January to July 2015, a consultant oncologist in my local team agreed to listen to me. I finally went to UCL (University College London) for a Gallium Scan and sure enough, there were several other tumours on my liver. I had a liver resection in September 2015, and it has bought me more time, but my disease is still on the move. The pace of growth is slower, but each scan brings a new dimension, new lesions which for now, remain small.

February 2023 brought new incidental findings. Evidence of lesions that may represent metastases to the lung have been investigated. Thankfully they still may or may not be – and I remain vigilant. We hope that it’s all still contained in my liver.

The proximity of the lesion of greatest concern requires more thought and to intervene now might be more damaging whilst I am still able to live some relatively normal life. We have returned to ‘Watch & Wait’ for a time. There is an increase in Lanreotide as a bid to outsmart the growth, but this brings more symptoms that are troublesome.

By January 2024, the question marks regarding lung involvement continue and together, we are monitoring developments. There are other treatment options in the ‘tool kit’ which my NET team can use when the timing is right.

But first – a change of lifestyle…

The whispers of symptoms continue but I now embrace them as signals from my own intuition – I know I still need to advocate for myself.

I live with the potential of progression. As well as managing the side effects which come with my monthly Lanreotide injections. I remain under shared care with my local hospital and The Royal Free NET Centre of Excellence. But the conductor in all this is me. I am my own secretary, my own investigator, my own researcher, and most of all, my own advocate. I fastidiously monitor this part of my story. My NET team is working in partnership with me – I oversee this lively onward medical exchange.

What’s helped me …?

Peer support from attending NET Natters, my fellow Neuroendocrine Cancer UK Ambassadors, and the Neuroendocrine Cancer UK staff.

Back in 2014, I helped set up a NET Natter group in Plymouth and we were a strong group until COVID hit. I have recently reformed the group and we now meet once per month. All new patients in the area are very welcome.

Offering a listening ear and signposting to appropriate guidance and support gives me a specific purpose outside of my own concerns. I can identify with the fear that accumulates so quickly from investigations, ‘the scanxiety’ timeline through to diagnosis and beyond. Helping to reduce the impact of this disease and to assist with maintaining links to a positive lifestyle is my passion.

Working in pastoral care for over 20 years I thought I knew how to handle trauma and fear. But it is impossible to be prepared for a cancer diagnosis.

Recently, I found I cannot balance my symptoms and medication side effects with my career, so I am finally retiring mid 2024.

I’m looking forward to enjoying time for myself, my wellbeing, getting fitter, and focusing on my hobbies of horticulture and gardening. I also want to grow the Plymouth NET Natter as there is such a need for the group in this area.

I cannot change my story, but I can use my voice to ensure others behind me are more easily understood.

I have moved from being ‘frightened to enlightened’. With every piece of research I read, every new patient I meet, and every new day I have, I count my blessings.

As Winnie the Pooh says: ‘it never hurts to keep looking for sunshine’.

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.

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.

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