Supporting the

Neuroendocrine Cancer Community

NCUK 2020
Virtual Summit

The NCUK Summit launched in 2020 – the year the the world went virtual. The Summit showcased over 20 UK clinical experts, specialists and fellow members of the Neuroendocrine Cancer community sharing their knowledge and experience about all aspects of Neuroendocrine Cancer, all through our virtual classrooms. This innovative programme culminated with a live event – ‘Neuroendocrine Cancer Question Time (NCQT)’, where viewers took part in a dynamic Q&A session – submitting their questions, to an expert panel.


Dr Amy Eccles Treatments Across the Neuroendocrine Cancer Spectrum – Advances and Options in Radioligand Therapy
Prof Andrea Frilling SIRT – How does it work & where does it fit in the neuroendocrine cancer pathway today and in the future
Catherine Bouvier Neuroendocrine Cancer UK – Welcome & Close
Prof Chrissie Thirlwell Genomic advances in neuroendocrine cancer research
Dr Christos Toumpanakis The latest Innovations in Diagnostic Tools for Neuroendocrine Tumours
Craig Speirs Living the Life of a NET Patient
Irene Wotherspoon Decision Making – Making it work for you
Prof John Newell-Price NETs- Hormone Syndromes and You
Prof Juan W Valle Treatments Across the Neuroendocrine Cancer Spectrum| Advances in Chemotherapy & Targeted Therapies
Kate Quirk Understanding Research and Reporting Back from INCA
Kym Winter Living with the Uncertainty of it all
Liz Bradley Nutrition in GastroEnteroPancreatic Neuroendocrine Cancers
Prof Mark Pritchard Spotlight on Gastric Neuroendocrine Tumours (NETs)
Prof Martyn Caplin Research and Clinical Trials in the UK & Across the Global Community
Prof Martyn Caplin (Keynote Speaker) Research and Clinical Trials in the UK & Across the Global Community
Mike Tadman Spotlight on Pancreatic Neuroendocrine Cancer
Philippa Hand and Anna Koziel The Neuroendocrine Cancer patient journey within a Local Hospital – the LNWUHT experience
Dr Raj Srirajaskanthan Spotlight on small and large bowel neuroendocrine cancers
Prof John Ramage Update on Neuroendocrine Cancer Terminology & Classification – what does that mean for my care?
Ronny Allan Becoming Your Own Expert
Dr Ros Taylor Difficult pain and NET tumours
Ryan Baron Options, Influences and Progress in the Surgical Management of Neuroendocrine Cancer
Tara Whyand Myth Busting and Research Needs in Nutritional Care
Teodora Kolarova INCA – The International Approach to Patient Advocacy
Prof Was Mansoor Spotlight on Lung Neuroendocrine Tumours
Zahir Soonawalla Surgery for small intestinal neuroendocrine tumours

Neuroendocrine Cancer Question Time with the experts: Prof. Martyn Caplin, Dr. Raj Srirajaskanthan, Mike Tadman, Nikie Jervis, Prof. Juan Valle, Dr. Amy Eccles and host, Catherine Bouvier


If you asked a question which we were unable to answer, you can find the answers below.

I am British national spent most of my life in UK now living in France . The health care is very good but what is missing is any team work. To see a specialist nets team as you suggest, I am wondering if I could be seen by such a team in the UK?

NHS UK provide information for UK Nationals living or considering moving to live outside of the UK : your entitlement to NHS care is based on individual circumstances (not necessarily length of time in UK) – and may be subject to change as UK Government policies and rules are updated : further information on access to NHS care is available from UK Govt here . This information specifies which aspects of care may be freely accessible and which may require payment for – as certain NHS services are residency based.

However, just as ENETs has provided support and information to UK clinical teams and care, it also provides this across Europe and there are ENETs accredited specialist services throughout the EU and further afield – a list of accredited centres is available here :

There are also ERNs (European Reference Networks) supported by the EU Parliament and Cancer Plan

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.

To review a patient’s diagnosis and treatment, ERN coordinators will convene a “virtual” advisory board of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. This way it is the medical knowledge and expertise that travel rather than the patients, who have the comfort of staying in their supportive home environments.

ERN EURACAN covers all rare adult solid tumour cancers, grouping them into 10 domains – one of these is Neuroendocrine Cancer

Further information about ERN EURACAN can be found here :

EU Cancer Plan information is available here :

I moved from Royal free to Bristol 7 years ago and i noticed instantly the vast differences in care. Why can’t the care be uniform across the country? . . .

This is a big question and speaks to the lack of specialist commissioning for Neuroendocrine Cancer across the UK : essentially specialist commissioning can help set standards for and pathways of care – further information on specialist commissioning can be found here :

NHS England :

NHS Wales :

NHS Scotland :

NHS Northern Ireland :

In the meantime there are specialist organisations and clinical teams providing expertise and experience in Neuroendocrine Cancer across the UK :

UKINETs : who alongside ENETs : have produced guidance and guidelines for specialist care

NCUK : and our partner organisations AMEND, ACC Support UK, and Cancer 52

and our new campaign NCUK Bridging the Gap :

Why do some Medical Staff not class this illness as Cancer and some that do class it as a “Good Cancer” which I was told?

Professor Valle addresses this question here – link to Q&A : Neuroendocrine Cancer Question Time (6:35-7:54)

Being diagnosed with Neuroendocrine Cancer can be a lot to take on board – not least the different words and terminology used – you may even feel a bit uncertain as to what exactly you have been told and whether it is in fact a cancer ? The word “cancer” may not even have been mentioned.

A common misconception about Neuroendocrine Cancers is that they all grow slowly – and so, it’s a ‘good’ cancer. However, whilst many of them do have a slow growth rate, others may grow as rapidly as more common cancers . . and really no cancer is a ‘good’ cancer. Knowing more about your Neuroendocrine Cancer, can help to adjust to some of the changes your diagnosis may mean for you and help with decision-making.

Neuroendocrine Cancer terminology e.g. grading and staging is explained here by Professor Ramage : – with further information in our handbook (section 2) and on our website here :

Should there be ascending colon resection with terminal ileum tumour with nodal spread?

This would depend on assessment of both large and small bowel, the degree of disease involvement and review of the aims and potential consequences of surgery – which can be assessed pre-operatively. The whole bowel will also be re-assessed and examined during surgery.

Information about surgery can be found in our Treatments section here :

Mr Soonawalla’s talk on surgery for ileal tumours can be watched here

What is the Panel’s view on NET patients having the Covid vaccine, bearing in mind that those who have PNets often have splenectomy and therefore immuno-compromised?

At the time of the NCUK Summit we were waiting for further information about the vaccine(s) : how each one works, who would benefit and who would be prioritised for it

link to Q&A : Neuroendocrine Cancer Question Time (1:04:00-1:06:30)

Since then the Pfizer/BioNTech vaccine has been approved by the MHRA (Medicines and Healthcare products Regulatory Agency) and vaccinations have started. Further COVID19 vaccines are going and will go through MHRA for approval before being used.

We have provided an update on our website here:

We recommend discussion with your specialist Neuroendocrine Cancer team, who will have this information, alongside your personal medical history and clinical information and will be able to provide expert informed advice on your individual risk and specific benefit of any vaccine : and as with any and all vaccines, medications, tests and treatments, notify those involved in your care if you do have a history of anaphylaxis and/or you carry an epipen.

MHRA guidance :

How vaccines work

Vaccines teach the immune system how to create antibodies that protect against diseases. The clinical view is that it’s much safer for the immune system to learn this through vaccination than by catching the diseases and treating them. Once the immune system knows how to fight a disease, it can often provide protection for many years.

Vaccines cannot trigger this response in those with reduced /low immunity and so may not provide the same level of protection : and ‘live’ vaccines are not recommended in the immunocompromised.

However, alongside vaccine development, scientists and researchers are also working on an antibody combination treatment that may provide temporary protection (up to 1 year) to those with a weakened immune system, who may be less likely to develop immunity following vaccination alone.

With Covid my next clinic will most likely be by telephone and I’ve been told I wont have a chest x-ray as I would have had 3 monthly if there was no Covid. Is this of concern as they will be relying on my feedback of how I am feeling 9 months post a lobectomy for a typical lung NET

Many follow up plans have been altered due to the pandemic, including the move to telephone or video consultations. Decisions regarding surveillance scans and tests will be based on individual personalised review and be guided by clinical evaluation regarding potential risk of exposure to COVID versus potential risk of postponement of scan / test.

NCUK Summit presentation on Typical and Atypical Lung NETs can be watched here :

NCUK Lung Booklet is available here : and via our Lung page :

Can you tell me please the protocol for Octreotide Therapy for a neuroendocrine patient undergoing surgery? I recently had a cholecystectomy and suffered an “haemodynamic instability” in the operating theatre. My surgeon said “he was concerned” . I had one bag of octreotide supposedly 1 hour before surgery, but my surgery was delayed 3 hours, the surgeon put two more bags of octreotide into me in the operating theatre and had called for a 3rd before I was stabilised. Am I abnormal?

There is expert informed guidance available regarding octreotide infusion around the time of surgery or invasive procedures – listen to Dr Srirajaskanthan and Cathy here : Neuroendocrine Cancer Question Time (8:25-10:20)

UKINETS bitesize guidance is available for download here :

NCUK resources -> Emergency Wallet Cards are available to order here :

Information on pre-treatment preparation is available here :

N.B.Carcinoid crisis is a very specific medical emergency – and whilst occasionally symptoms of Carcinoid Syndrome may appear very severe – this is not the same as a carcinoid crisis.

In this instance Carcinoid Crisis has occurred – leading to “haemodynamic instability” requiring urgent, immediate medical intervention – and whilst rare, is not abnormal, but more a potential risk / consequence of Neuroendocrine Cancer.

Can grading change over time ?

Although unusual, we do see changes in a small subset of people with Neuroendocrine Cancer . We know that there is high variability not only amongst tumours, but also within tumours.

as discussed in our Q&A session here :

Neuroendocrine Cancer Question Time (47:01-49:34)

Does anyone have advice about eating and diarrhoea problems following surgery (small bowel nets) and in particular how to combine this with pre- existing eating problems. Diarrhea from surgery or from rating problem? Also, is there any link between the two? A person having eating problems with diarrhea more likely to develop neuroendoctrinal cancer in the ileum or not?

In terms of the relationship between a pre-existing eating problem and diarrhoea – it would depend on the type of eating problem and whether malnutrition and/or deficiencies have occurred as a consequence. Diarrhoea has many causes as discussed during our Q&A session Neuroendocrine Cancer Question Time (13:00-16:45 and 49:42-51:46) and throughout the Summit talks.

However, there is no clinical evidence that someone with eating problems and diarrhoea is more likely to develop neuroendocrine cancer in the ileum, than not – though there may be other general health consequences, such as malnutrition and/or subsequent deficiencies.

Information on diet and nutritional intake, including the 2 dietician talks from the Summit can be found here :

Diet & Surgery booklet :

Prof Robert Lustig believes there is undoubtably a metabolic approach to beating cancer. The ketogenic diet forms a facet of this and people, anecdotally, are seeing positive results all around the world. With this in mind, what place, if any, does the metabolic approach and ketogenic diet have in the treatment of NETs? Also, are there any studies on this currently that include NETs in their research? Given what we know about Warburg’s Nobel prize work, and the affinity cancer has for glucose, is there any place for alternative diets in the treatment of NETs? For example, Therapeutic Keto diets are currently gaining Traction in the cancer realm with some positive initial results

Many cancer drugs aim to interrupt the metabolism of cancer cells. There are no studies regarding low carbohydrate /ketogenic diets or modified ketogenic diets in symptomatic control or treatment of neuroendocrine cancer. The published research focusses on the control of seizure symptoms within glioblastomas (brain tumours), and regarding breast cancer, ovarian cancer, endometrial cancer in terms of weight, cholesterol and quality of life. These studies lasted 12 weeks and the long term risks beyond that are unknown. Within 12 weeks there were minimal changes to weight and cholesterol. Quality of life does not seem to be affected significantly, with some women reporting feeling better, although where trials used chemotherapy and / or radiotherapy, compliance dropped as side effects were too severe. Some studies have very small sample sizes, including one with lung and pancreatic adenocarcinoma patients. Collectively all of the studies lack evidence to use the ketogenic diet or modified ketogenic diet for controlling tumour growth. This is because they did not record changes to survival length or progression free survival. Therefore ketogenic diets require further research to be recommended for use in any cancer.


What are your thoughts on off label and other supplements in the treatment of metastatic NETs? Eg Xanthohumol, Curcumin, dipyridamole or modified citrus pectin?

There is currently little validated evidence in terms of symptomatic control or treatment of neuroendocrine cancer regarding these supplements. However, further research is recommended and is essential before these are adopted for regular use in any cancer.

As with any medication or dietary change we recommend discussion with your specialist team, as certain herbal or dietary products can have an effect on certain treatments., for example, grapefruit juice : link to

Further information on diet and nutritional intake, including the 2 dietician talks from the Summit can be found here :

If you have no gall bladder and now have bile salt malaborbsion and on sandostatin analogue and Nutrizyme 22 not working effectively, what’s the cause of action

There are a number of causes for diarrhoea in Neuroendocrine Cancer – as explained in some of the Summit talks – and as Mike Tadman explains in our Q&A session identifying the underlying cause is important : Neuroendocrine Cancer Question Time (49:42-51:46)

Further information is available on our website : – where you will also find the talks by expert dieticians Elizabeth Bradley and Tara Whyand. This topic is also mentioned in Mr Soonawalla’s talk on ileal surgery : and Mr Baron’s talk on pancreatic surgery

How much does environmental factors and stress have on this condition?

In reverse order – firstly stress : there have been a number of studies, over the years, that have looked at the influence of stress and cancer development – to date these have found no evidence that those who are more stressed are more likely to get cancer. However, how individuals cope with or manage stress can affect health.

For example :

Smoking: do you smoke when you are stressed? Or smoke more than you usually would?

Diet: do you eat more when you are stressed? Or less ? Or eat differently?

Alcohol: do you drink when you are stressed? Or drink more than you usually would?

Physical activity: do you do less physical activity when you are stressed?

Sleep : do you have a sleep disruptions? find it hard to relax and get to sleep? find yourself waking early and/or unrested?

All of the above can affect your general health and overall cancer risk – and all may affect how well you may tolerate anti-cancer treatments and experience symptoms – for example, for those with Carcinoid Syndrome, may find symptoms such as diarrhoea and/or flushing can worsen during times of stress (physical and/or emotional).

Kym Winter talks about stress or “Managing Uncertainty” and how it can affect overall well-being here : also “Hormone Surges” here

Further information on NCUK support services and other resources can be found here :

As to environmental factors – it can depend on what is included in that definition ( from exposure to pollution through to effects of deprivation e.g. poor housing conditions) .

Using this wide definition, there is evidence that environment has an influence on health – though, to date, there is no conclusive evidence directly linking environmental factors to the development of all Neuroendocrine Cancers.

However, in high-grade, poorly differentiated disease, some of the environmental factors associated with the more common site specific cancers, such as Lung Cancer, may be applicable – such as smoking and toxin exposure.

Excessive sunlight exposure can damage cells in the skin, which can lead to the development of Merkel Cell Cancer (a rare Neuroendocrine Cancer of the skin) : our MCC booklet is available here :

Essentially, our behaviours and environment, alongside our genetic make-up, can all influence our health. However, unlike genetic changes, epigenetic changes (that is those related to our behaviours and environment) can be reversible – though some may be more difficult to change than others.

You may find Professor Thirwell’s talk on genomics of interest :

What evidence is there, if any, that there might be a connection with individual or combined impacts of hormone-disrupting chemicals, such as BPAs and PCBs, and agro-chemicals (herbicides, insecticides and fungicides – which are used in important conventionally-farmed cereal crops, for example) with neuroendocrine cancers?

During recent years, the issue of Endocrine Disrupting Chemicals (EDCs) has received increasing attention by endocrine researchers, regulatory authorities as well as public and political bodies. The level of interest generated indicates the need to increase awareness and scientific information available on EDCs. Research is ongoing and to date there is no conclusive evidence directly linking EDCs as causative agents in the development of Neuroendocrine Cancers, however there may be factors that influence the hormonal balance of the body that may have implications for the maintenance of ‘normal’ health. Further information on this subject is available from the European Society for Endocrinology here:

Can stage one nets well differientated in the stomach spread or change?

“Gastric NETs less than 1.5cm, Grade 1 well-differentiated, rarely change over time, many only require surveillance and have an excellent prognosis” – Professor Mark Pritchard, in his summit talk :

Further information can be found on our Gastric / Stomach NET page here :

Is it normal to get bloating, flushing, tiredness, sharp stabbing pains with Gastric NETs?

Symptoms such as these would be unusual in Gastric NETs – as explained here in Professor Pritchard’s talk :

and by Dr Srirajaskanthan in our Q&A session : Neuroendocrine Cancer Question Time (26:20-28:20)

Further information, including possible symptoms, can be found on our Gastric / Stomach NET page here :

My brother had a pancreatic NET in 2013, diagnosed in his late 50’s, sadly he died a few months later as it had metastasised to his liver and bones. I had a routine bowel screening aged 55 in 2018 and was found to have a small Rectal NET which was removed, I then had an ESD as it was present at the margins. How rare is it that siblings would both get NETs? I had follow-up scans for 18 months and have now been discharged. Do you think I should continue to have surveillance/scans?

I believe I was told at the time of my diagnosis that there was not enough research to know how my tumour may have developed, is there any research known that could know if having had a tumour, you could have another one, I am being routinely checked, My father had bowl cancer, so is there anything to say that that may have been a cause for my net, or whether i can pass this on to my children?

Most Neuroendocrine Cancers are sporadic – this means they occur without an identifiable familial or genetic link. However, we have, on occasion, seen familial clustering of cancers – and there are a very small number of people who have an identified genetic condition that may increase their risk of Neuroendocrine Cancer.

Please note that having the genetic condition does not mean you will definitely develop a Neuroendocrine Cancer – but that you may have a lifetime risk of developing one.

Known Neuroendocrine Cancer related genetic conditions are very rare and include:

Multiple Endocrine Neoplasia disorders

Familial Pheochromocytomas / Paragangliomas

Familial Medullary Thyroid Cancer (FMTC),

Succinate Dehydrogenase (SDH) disorders.

Neurofibromatosis 1

Von Hippel Lindau.

as Professor Caplin explains during our Q&A session Neuroendocrine Cancer Question Time (2:34-6:00)

You may also find either or both of Professor Thirwell’s Summit talk on genomics : and Professor Bergsland’s September MENETs talk on genetics here helpful.

I am a 56 year old lady who has noticed several changes in my body for several years and just put it down to Menopause (night sweats, poor hair growth, many benign cysts in my breasts and yes, the occasional irritation with other people). In April 2020 I had my Appendix removed where they found a NET of .9mm. Practically all of my previous symptoms have ceased since the surgery. I would be really interested to know roughly how long you think it could have been growing?

The rate at which neuroendocrine cancer cells develop and grow can vary significantly from patient to patient based on the location, type and stage of the cancer.

Professor Ramage in his talk on Terminology in Neuroendocrine Cancer covers the topic of grading :

From information collated over time, we have seen that there are a number of neuroendocrine tumours that are very small and slow growing (Grade 1). Studies have shown that these particular types of tumours can potentially take many years to develop and may, in fact, last a lifetime without causing any symptoms or spreading. However, there are others that may have a more rapid growth rate and these may develop and spread more aggressively – over months, or even weeks. Most appendiceal neuroendocrine tumours are within Grade 1.

Dr Srirajaskanthan’s Summit talk on small and large bowel neuroendocrine cancers also covers appendiceal primaries :

How prevalent is neuroendocrine in the Black and minority groups?

Approx how many NETS patients are there estimated to be in the UK? What percentage are undiagnosed?

Black and minority groups : 2015 UK data : Neuroendocrine cancer incidence : 90.1% White, 2.6% Asian, 1.8% Black, 1.4% other and 4.0% ethnicity unknown – but this would need further analysis of population by ethnicity by year to reach true incidence (likewise for prevalence) – and not all of that data is currently available.

In a 2018 ASCO abstract looking at American data : overall figures showed 79% were white, with 14.4% black, however when analysed by population percentage e.g. number of black people affected within the black only population – incidence was higher than white people affected in the white only population.

In terms of UK population – latest figures for England (2015-2017) show 14,138 new Neuroendocrine cancer diagnoses – with an even male/female split – giving an incidence of 9.37:100,000 ( a further increase on previous figure of 8.84:100,000 from 2013-2015 data and 3.9:100,000 in 2001). It is estimated that there are about 30,000 people within UK living with Neuroendocrine Cancer.

Working out the number of people currently undiagnosed would be difficult, the data we have is based on the number of people who do (eventually) get a diagnosis and though we know, from national and international surveys that there is an average 3-5 year time to diagnosis (from onset of symptoms) we do not know how many people may go through their life and die undiagnosed.

I had several Lung Neuroendocrine Tumours removed by surgery in 2012. In 2017 another Lung Neuroendocrine tumour was found on a CT scan and I had it removed by surgery in 2018, I was told that it was a reoccurring Lung neuroendocrine tumour, but when I had the first Lung surgery in 2012 I was told that they had removed all the tumours, so how was the tumour they removed in 2018 a reoccurring tumour.

This question was addressed during the Q&A session, Neuroendocrine Cancer Question Time (18:44-24:06)

With further information available via our lung page and Lung Booklet :

I have an atypical lung net metastasis and currently taking everolimus, I have been advised that it is inoperable. I have had an Octreotide scan a year ago now and have CT scans (contrast) every 6 months approximately . Is it likely that I will need to have another Octreotide scan or is it only needed once?

Timing and type of surveillance will be guideline based but adapted to take into account your Lung NEN type, symptoms and overall wellbeing/ general health.

NCUK Summit presentation on Typical and Atypical Lung NETs can be watched here :

NCUK Lung Booklet is available here : and via our Lung page :

My cancer progressed to terminal high grade NET last year, and after chemotherapy I’m now under oncology instead on endocrinology. Can you explain why the switch?

A multidisciplinary team (MDT) is made up of disease specific experts including surgeons, radiologists, histopathologists, oncologists, clinical nurse specialists, allied health professionals, and multidisciplinary team coordinators and has a designated lead clinician.

This means that you can be seen by a member of the team most appropriate to your care needs – for example – if your care requires chemotherapy – you may be seen by the oncologist on the team, if you need surgery you’ll be seen by the surgeon. Who you see may change over the course of time according to your care needs.

You mentioned earlier that NET patients can be more likely to have other types of cancers, like breast, bowel etc.. When we have our surveillance scans, is it standard that this is considered? Or, are our scans more focused on the areas where current disease is being monitored?

Surveillance scanning is primarily to check on what is happening with your neuroendocrine cancer, however, the scans may also identify other abnormalities (should they occur), however, as they are tailored to monitor neuroendocrine they may not be the best tests to monitor for some of the more common cancers that national screening programmes offer – eg a mammogram, cervical ‘smear test’, etc . . .so we would recommend taking up and continuing with national screening programme when offered. However, it may be that your primary site is in the same place as the national screening programme is monitoring – so if you are already undergoing site specific checks it is worth discussing with your specialist team whether you need to repeat certain tests/scans. Professor Caplin talks in brief about this at the Q&A session : Neuroendocrine Cancer Question Time (51:51-53:30)

I had a small intestine NET removed in 2019. There is a slight spread to the liver of about 1%. I am currently being monitored 6 monthly and not on any treatment. I wonder if this illness might shorten my life expectancy much. I am 63 years old?

This is difficult to answer – as neuroendocrine cancer can behave so differently to other kinds of cancer and in some people it can change behaviour (or grading) over time – though this is uncommon. There are statistics regarding overall survival and these vary by primary site, stage and grade . . . but prognosis may also vary by degree of expert care team involvement and other health conditions and considerations.

It is a question best answered by your specialist care team, who will, we hope, have not only all of the information about your particular NET and current health status, but also your medical history, medications list, treatment history, family and social support and preferences for treatment ; all of which can be used to help inform a prognosis.

What are the guidelines for a patient with pancreatic NETs that have metastasized to the liver being able to access PRRT treatment if their hospital does not have this facility?

Many of the specialist NET clinics and Centres work collaboratively and patients can be referred to a Centre that has PRRT to confirm whether the treatment is appropriate and to facilitate access.

The process for this may vary depending on where you are within the UK and what agreements are in place across the devolved NHS organisations, for example, NHS Wales has agreements with Liverpool and London.

And how does the patient go about taking part in a PRRT clinical trial?

All studies, looking at new treatments, or new uses for existing treatments, are designed differently depending on what is being researched – most now will include monitoring impact on quality of life – not just cancer response or side-effects.

Increasing patients are being included in clinical trial design – what to study?, how?, what is important to check for?

However, there are also strict regulations, that need to be followed, to ensure that all stages or ‘phases’ of a clinical trial can be run safely

For further information about trials and what trials might be running visit our Research pages :

PRRT: can you explain the basics of how patients are selected for this treatment, and what tests are used to predict their response to the treatment beforehand ,

And then during the treatment and afterwards, to check against the predicted outcome?

Dr Amy Eccles talked about this in her talk – and also addressed this question in our Q&A session : Neuroendocrine Cancer Question Time (10:50-12:30)

Both myself having had MIBG and other patients within the NCUK Facebook Community who have had PRRT have experienced severe eczema after treatment. My medical team have advised that this side effect is not known to occur with this treatment and from what I understand those who have had PRRT have had the same info. Is there a way to have this reconsidered? Or do you recognise it as a side effect? I am 4 months post most recent MIBG and the eczema is manageable with steroid ointment and Aveeno prescribed by my Dr. It has not gone and admittedly it is rather annoying! I have changed the washing detergent I use and installed a water softener for the shower. I also avoid any alcohol based products on my hands which is a little worrying concerning covid.

Irritated skin can be caused by a variety of factors. These include immune system disorders, medications and infections.

Due to the breakdown in cells by the Lu-177 treatment, you may experience a temporary excessive release of hormones, altered blood count and inflammatory response.

Lu-177 contains a somatostatin analogue – skin problems such as a rash and itchy skin can occur in about 1 in 100 people – though this is less commonly seen in PRRT than in the slow release monthly injection format.

In general, functional Neuroendocrine Cancers may secrete as many as 40 secretory products (vasoactive substances), the most prominent being 5-hydroxytryptamine (5-HT, serotonin) but also tachykinins, histamine, kallikrein, prostaglandins, catecholamines, and motilin. Serotonin and other hormones can lead to a local inflammatory response which may cause skin irritations and rashes – and in about 5% of patients with carcinoid syndrome, tryptophan deficiency with symptoms of dermatitis, diarrhoea, and dementia (pellagra) can occur.

Correcting vitamin deficiencies and anaemia can help – and some have benefited from prescribed anti-histamines (rather than self-administered over the counter medication).

Simple scent and alcohol free topical moisturising creams may provide some relief for example aqueous cream.

If skin irritation persists or worsens we would suggest a dermatology opinion in collaboration with ongoing neuroendocrine specialist care review.

At what point would you stop treatment attempts and focus on quality of life for the remaining time?

Quality of life should permeate through all care and decision-making – and can be addressed by upfront discussion from the very start – being clear on aims, expectations of and hopes for care and treatments. These 3 things appear similar but can be very different – link to Q&A : Neuroendocrine Cancer Question Time (57:58-1:00:46)

Supportive care, Symptom control or ‘Palliation’ refers to what is used to alleviate or reduce the impact your cancer, other health issues and /or treatments may be having on you and your physical and mental health.

It can include anything from simple medication and / or a combination of some of the treatments that may be considered for or you may undergo to counselling and practical support.

Managing symptoms and ensuring your mental/emotional well-being is an important part of total care – and therefore supportive care occurs from diagnosis, through surveillance and / or treatments and is not just for ‘end-of-life’.

You may also find helpful, alongside Dr Ros Taylor’s talk on pain management : and Irene Wotherspoon on decision-making :

There are also several sections in our handbook that may also be useful, in particular section 8 :

How similar are rectal NeNs to haemorrhoids in appearance and how are the differentiated from each other? Do rectal NeNs secrete any hormones?

Dr Srirajaskantham talks about small and large bowel Neuroendocrine Cancer – which included appendiceal and rectal tumours:

Neuroendocrine Cancer of the Rectum rarely exhibits a hormone- associated syndrome.

Can a patient have SIRT to liver after PRRT? And if yes, is there an optimum time window known?

There is no trial data to support using one mode of treatment preferentially before the other, however patients have undergone SIRT either before or after PRRT safely. SIRT is not currently commissioned or approved by NICE for NHS use in Neuroendocrine Cancer and decision regarding suitability and appropriateness of treatment would be dependent on a number of factors including aim of therapy, total dose radiation exposure to date, general health – as well as bone marrow, liver and renal function – you can hear Dr Eccles reply here link to Q&A : Neuroendocrine Cancer Question Time (43:20-46:49)

Knowledge and information about Neuroendocrine Cancer is ever-changing and updating as further research is undertaken and expert evidence is collated – you can find out more about clinical trials here :

What is the success rate for heart valve replacement and prognosis for patients with carcinoid heart disease?

Carcinoid Heart Disease (CHD, Hedinger syndrome), is a rare condition that affects about one in five (20%) patients who have both a Neuroendocrine Cancer AND Carcinoid Syndrome (CS), particularly those whose primary is in the small bowel followed by lung, large bowel, pancreas or ovary. It is thought to be related to raised levels of peptides and hormones produced by Neuroendocrine Cancer cells – in particular serotonin.

In normal health, each time your heart beats, it first fills with blood and then pumps that blood out. The heart has valves that open and close with every heartbeat, helping the blood to flow smoothly and freely in one direction through the chambers of the heart and to the rest of your body. But if a valve doesn’t open or close properly, problems can occur. The body may not get a sufficient supply of blood (stenosis) or, in some cases, blood can seep back into the heart (regurgitation).

In Carcinoid Syndrome raised serotonin levels may lead to the development of plaques on the surfaces of the valves of the heart. Valve leaflets become thickened, retracted and immobile, resulting in either stenosis (failure of valve to completely open) or, most often, in regurgitation (failure of valve to completely close) that causes right ventricular dilatation and ultimately, right heart failure.

Treatment is aimed at reducing excess serotonin levels and managing effects on the heart – this may in some instances lead to consideration of heart valve replacement.

A review of available published reports on outcomes following valve replacement shows a 1yr survival of greater than 70% (5yr >60%) compared to untreated severe CHD survival of less than 40% – please note that this review and subsequent publications have shown that overall survival in both groups is improving over time – as awareness, early detection and intervention improves.

Consideration of a number of factors can influence outcomes and whilst statistics may give some information, the incidence of Carcinoid Heart Disease remains relatively low, the severity varying between people and should be assessed on an individualised basis : age, fitness, other illnesses/health problems, weight, overall burden of tumour disease, treatment options for underlying Neuroendocrine Cancer, degree of heart valve impairment, number of valves affected, any other heart health issues and surgical experience, expertise and infrastructure to effectively and appropriately manage CHD.

We are aiming to hold a session on Carcinoid Heart Disease in our Spring “Classroom” – in the meantime there is information on CHD here :

Is Temozolide & Capecitabine used in the treatment of poorly differentiated and aggressive pNETs tumours, or is it only used for differentiated tumours? If so, in what circumstances would it be considered appropriate?

Professor Valle explains the use of CapTem in our Q&A session : Neuroendocrine Cancer Question Time (24:15-26:15)

For further information regarding treatments in high grade and poorly differentiated disease – watch Professor Valle’s full talk on Chemotherapy and Targeted Therapies here : and an overview in our Treatments section here

How many ‘stable’ 3 x monthly scans, would allow a patient to move to 6 monthly monitoring instead?

Although there are guidelines regarding follow up – this is tailored to the individual and their specialist team’s assessment of their disease history (stage, grading and treatment to date), test results, symptoms and general health.

Why is the gallium scan not given to see if there are other nets in the body?

A Gallium scan is generally used, where available, as part of diagnostics and then as clinically required in surveillance.

At the time of diagnosis there will be other scans that will have been performed as part of the diagnostic work up – these can be compared with Nuclear Medicine scans (disease appropriate functional imaging) to compare findings as well as confirm diagnosis. If the CT and / or MRI shows the same distribution of disease then either or both can be used as surveillance. These scans are very effective at picking up structural change(s). If during follow up there is a query about disease status or a change of or new treatment being considered then a Gallium scan may be requested.

With Gallium PET scans having proved to be so important in diagnosing and managing NETs and its increased use for other cancers, is there likely to be sufficient capacity in the UK to cope with the extra demand?

This question was addressed in the Q&A session : Neuroendocrine Cancer Question Time (1:00:54-1:03:44) and there are considerations to be addressed – some of which are outlined within Health Policy Partnership document :

No Pancreas – what effect if any might SSAs have on blood sugar management

Was mentioned in the Q&A session :

Neuroendocrine Cancer Question Time (40:40-43:17), however, as can be seen this is a difficult question to answer. We know that SSAs can affect blood sugars, particularly due to the effect SSAs have on pancreatic function (on both insulin and glucagon), however where there is no pancreas and blood sugar control is regulated by monitoring and adjustment of glucose (carbohydrate) intake and insulin it is difficult to determine exactly what role SSAs may play in that control.

What about inactive NETs? Mine was inactive, did not light up in the bowel on PET while liver secondaries did. Is the treatment still Lanreotide or should it include treatment for inactive tumours too/as well?

In Neuroendocrine Cancer there are two main types of PET scan : Gallium 68 Dotatate and FDG

Gallium picks up somatostatin receptors – often found on the surface of well-differentiated Neuroendocrine Tumours, whereas FDG picks up areas of high tumour activity, so is usually used for poorly-differentiated Neuroendocrine Carcinomas. Occasionally Neuroendocrine Cancers may have features of both – so both types of PET may be used.

Lanreotide works best by attaching to somatostatin receptors – therefore is more likely to be effective in Gallium positive sites of disease. However, there are instances where either the tumours have too few receptors (or are very small) to be picked up on Gallium scan – or where effective treatment has taken place (where although there may be evidence of tissue – the tumour is inactive).

Decisions regarding treatment will be based on clinical assessment and evidence-based knowledge on risks vs benefits – and discussion with the individual patient.

Also on the topic of lanreotide, how is the side effect of depression usually managed?

Depression is listed within the possible side effects of somatostatin analogues, however, it may not be then only contributor – there are both physiological and emotional drivers that can affect mood . . .link to Q&A : Neuroendocrine Cancer Question Time (53:55 – 55:19)

Patient Information Leaflet (PIL) IPSEN Lanreotide (Somatuline Autogel) :

If you already live with anxiety, depression or mental health diagnosis let your mental health support team and your Neuroendocrine Cancer team know so that together you can work out how best to support you.

Resources you may find helpful :

Newly diagnosed :

Living with : and

Counselling video :

Having no pancreas i am diabetic, is there any evidence that somatuline changes the blood sugar management regime throughout the 28 day cycle?

Patient Information Leaflet (PIL) IPSEN Lanreotide (Somatuline Autogel) :

How many years can you have lanreotide injections ?

link to Q&A : Neuroendocrine Cancer Question Time (30:01-43:35)

How should you report side-effects or suspected side-effects from Lanreotide? Is it important to report to the Yellow Card Scheme?

link to Q&A : Neuroendocrine Cancer Question Time (16:45-18:32)

As with all aspects of Neuroendocrine Care – discussion with your specialist NET team can help provide information to ensure informed decision-making and inform clinically and personally appropriate adjustments to care.

For Pharma reporting :

For Yellow card reporting :

I have monthly lanreotide shots for a PNET. The overall increased motility is fairly stable for a few days and then suddenly it’s not and I need to go to the bathroom 5/6 times a day. This also coincides with increased nausea. Can this be due to the slow release effect, i.e. that it’s not steady but comes in spurts? I’m also taking calcium-enriched milk, yoghurt, etc. for osteoporosis.

link to Q&A : Neuroendocrine Cancer Question Time (13:00-16:45)

Also Elizabeth Bradley’s talk at the Summit – who explains the different types of symptoms and causes :

I’ve been on Sandostatin LAR for almost 10 years now. What are the long term side effects?

Patient Information Leaflet (PIL) NOVARTIS Octreotide (Sandostatin LAR) :

If you took a break from Lanreotide for say, 6-12 months, then restarted it would it be more effective?

There is no evidence-based answer for this question – and rationale would need to be discussed with your specialist NET team/CNS

A somatostatin analogue (SSA) is a small synthetic hormone that’s a copy of one that we all make, called somatostatin.

Hormones, or their effects are usually only short-acting – which is important – as the responsive control of hormone activity is essential to maintain the body and its functions in balance. If we need more, our body’s messaging system stimulates release, if we need less that same system signals for release to stop.

In Neuroendocrine Cancer a sustained release of somatostatin is required to keep excess hormone release to a minimum and to maintain a balance for tumour cell control. To maintain control levels the injection is given at regular intervals – usually every 28days. From 1st dose – it can take 2-4 monthly injections to gain optimal somatostatin levels, though benefit may be noticed sooner.

If you stop a long-acting SSA then the level of somatostatin analogue starts to drop and clears from the body. Therefore, if you stop and do not restart for 6 months, it can take time for levels to reach effective level again.

My legs are full of lumps from the injection is this normal ?

This is not uncommon around injection sites – some are temporary but others can persist. It may be related to administration and/or injection technique, body size and site – but this is not always the reason.

As with any side effect of treatment this should be raised with your NET CNS / team – and if unresolved raise with pharma company and/or via yellow card scheme.

What’s the rationale for carrying in with SSA monthly Lanreotide injections during PRRT treatment?

Continuing SSA (Lanreotide or Octreotide) through PRRT therapy has a 2 key reasons – symptom control and maintenance therapy for tumour control.

Symptom control – PRRT may not result in immediate or complete tumour and/or hormone related symptom control – continuing SSA allows for continued relief from symptoms.

In some people, PRRT can result in a temporary increase in symptoms as your body reacts to the treatment – ongoing SSA therapy helps to reduce this impact.
However, there is also debate, particularly for those who do not have symptoms or a functioning tumour, that if you have had disease that has not been controlled by SSA alone – there may be a discussion about whether to continue.

link to Q&A : Neuroendocrine Cancer Question Time (28:22-31:55)

As with all aspects of Neuroendocrine Care – discussion with your specialist NET team can help provide information to ensure informed decision-making and inform clinically and personally appropriate adjustments to care.

How likely or recommended is liver surgery (or another liver treatment) to remove the largest remaining tumours after PRRT?

All discussions regarding treatment options are usually held within the MDM (Multidisciplinary Team Meeting) then discussed with the individual. In regards to this question, liver surgery and/or treatment decisions would be based on response to PRRT and aim of intervention – alongside risk/benefit assessment and possible short and long-term consequences and outcomes of planned care. Where treatment would be assessed as being potentially beneficial, with low risk, then it would be considered. If it was thought to be of too high a risk – with an uncertain or potentially negative outcome this would be explained.

My husband has a pancreatic NET with mets in his liver and we wanted to know why it cant be removed when you can live without your pancreas or part of it

Addressed during Q&A : Neuroendocrine Cancer Question Time (32:00-39:00) Where treatment would be assessed as being potentially beneficial, with low risk, then it would be considered. If it was thought to be of too high a risk – with an uncertain or potentially negative outcome this would be explained.

I was diagnosed with NETS 3 years ago, but have never had any pain whatsoever associated with it. Is this normal? Can I expect pain if the tumour grows?

Many people with neuroendocrine cancer have few or no symptoms at all, less than half have hormone-related symptoms.

Pain – has different causes – and is usually due to where the tumour is, its exact position and sometimes size : how that affects surrounding organs and tissues and whether it is producing any hormones or similar substances that may affect how the body normally functions. Therefore is very individualised.

For example – a small bowel primary – may be so small it does not interfere with normal function – it doesn’t narrow the bowel or cause an obstruction. However, it may produce hormones that can cause cramping and abdominal pain.

Liver metastases may cause no pain at all- or a dull right sided ache or even right shoulder pain (referred pain) – but some, particularly those nearer the surface of the liver may rub against the lining that covers the surface of the liver (called the capsule) and this can cause quite sharp pain.

As tumours grow they may start to cause pain or discomfort – but again, it depends on where they are and what effect they are having on the normal function of the surrounding tissues and organs and their hormone production.

Size of tumour does not always influence type or severity of pain or other symptoms.

How to cope with lethargy and how much hair loss should be anticipated. Necessary to purchase false hair prior to confirmed treatment plan as delivery etc. Would take several weeks to arrange. In between treatment two months gap how normal does one feel. Energy levels etc. What to expect to be prepared and understand the implications experienced by patients.

Lethargy is perhaps the most common and least well understood or addressed symptom associated with Neuroendocrine Cancers and may have a number of factors. It can be a symptom of the cancer itself or a side effect of treatment.

Cancer related fatigue, particularly one that can affect your hormone levels, can affect you physically, emotionally and mentally. How long it lasts, the degree of severity and how often you might have it is different from person to person.

It may also depend on the site of cancer, how it is affecting you body and the type of treatment you are receiving (or have received) to try to deal with either or both the cancer.

Anaemia (low red blood cells, low iron and/or B12) can make you feel fatigued.

Vitamin and mineral deficiencies – and altered nutritional intake – may also contribute.

Treatments – such as SSAs (somatostatin analogues), surgery, PRRT, etc – can also have an effect.

These treatments as well as nutritional state may also affect skin and hair – SSAs are associated with hair-thinning, so a treatment such as PRRT, may also have a similar effect (as PRRT uses an SSA to target treatment).

Certain chemotherapy drugs may also contribute to hair-thinning or hair loss.

Is there a correlation on the intensity of flushing to the severity of the cancer?

The short answer is No . . . .There are a number of factors that may affect the intensity of flushing beyond the size or number of tumours – alongside assessment of other potential contributing causes of flushing. Small tumours can produce excess hormones and large tumours may produce very little.

How important and relative is the 5-HIAA Test?

5-HIAA is a breakdown product of a hormone called serotonin, a hormone derived from the amino acid tryptophan, one of the eight essential amino acids obtained from food. About 90% is produced in the gut where it helps transmit nerve impulses, constrict blood vessels and regulate gut function. The remainder produced in the Central Nervous System affects mood, appetite and sleep. No blood-brain barrier cross-over.

After it has been used by the body, serotonin is broken down in the liver, and its metabolites, including 5-HIAA, are excreted in the urine. Urinary 5HiAA is an indirect way to measure how much serotonin is in the body.

Excess levels of serotonin produced by Neuroendocrine Cancer cells – especially in those with Carcinoid Syndrome – may be released continuously or intermittently and can lead to significantly increased quantities of 5-HIAA in the urine and / or blood.

A blood test, to measure this, is also now available – reducing the requirement for 24hr urine collection.

Dr Srirajaskanthan explains how useful monitoring 5HiAA can be in our Q&A : Neuroendocrine Cancer Question Time (55:30-57:48)

Further information on Tests used in Neuroendocrine Cancer can be found here – and Dr Toumpanakis talks about Innovations in Diagnostic Tools here

And how does the patient go about taking part in a PRRT clinical trial?”

If you are searching for trials, having information about your particular neuroendocrine cancer may help you to narrow down your search. Trials will always have a list of eligibility or inclusion/exclusion criteria. This is a list of characteristics that all patients must have to be accepted onto the study. Types of eligibility criteria can include: age, and current health status but may also specify disease-specific criteria

If you find a trial you think you may eligible for you can discuss it with your specialist team.

Your doctor can refer you to trials appropriate for you:

  • They will also be able to contact the team running the trial and find out more information about it.
  • They will be able to review the information about the trial – alongside all of the things they know about you, your current health and previous treatments – to see if the trial is suitable for you.

Being under a specialist neuroendocrine team, or having access to that team, ensures that you have access to experts – who will not only have knowledge and experience about your particular cancer and care pathway but also information about or direct involvement in specific Neuroendocrine Cancer research – so will be able to answer questions you may have about clinical trials.

This exciting event could not have been made possible without the wonderful healthcare professionals, specialists and patient community who have given up their valuable time, when they are most pressurised and busy, to produce and present presentations and answer your questions.

We’d also like to thank Red Shell Productions for recording the Summit classrooms and co-ordinating the live Q&A event.

If you feel that you have benefited from the NCUK Summit and would like to make a donation towards any future Summits, then you can do so here. Thank you.