The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

The 5 Es was a good idea but the boundary was never properly defined.  I don't believe it applies to all NETs (including patients) and I don't believe it is necessarily confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid…
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Chemo or not Chemo – that is the question 

Chemo or not Chemo – that is the question 

I often see certain drugs for the treatment of Neuroendocrine Tumours (NETs) described as "chemotherapy". Although since I wrote the first edition of this post in 2016, I don't see it as much today in 2024.  Education is a wonderful thing! I think there must be some confusion with more modern drugs which are more targeted and work in a different way to Chemotherapy.  According to Mayo Clinic: "In many ways, cytotoxic chemotherapy is "targeted" at specific molecules that regulate progression through the cell cycle; however, these targets are generally not specific for tumour cells. Because systemic cytotoxic chemotherapy targets…
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Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Update 4th May 2026 - Ronny releases a Spotlight on Small Intestine NENs - click here to read Updated 12th April 2026.  New paper from known experts in NET surgery.  Definitely worth reading as it covers some areas which are considered controversial but very relevant to the situations than can arise in small intestine NET surgery. Recent 2026 paper from multiple experts across the world including but not  limited to Canada/UK/Europe/Mexico/Israel/USA "The current recommended approach for all patients with stage IV SI-NETs is for assessment by a multidisciplinary team with NET expertise, including a surgeon, and that strong consideration should…
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Neuroendocrine Cancer:  Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc.  Ditto for B to Z.  Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
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Lanreotide for Lung NETs – SPINET Clinical Trial

Lanreotide for Lung NETs – SPINET Clinical Trial

Reviewed and updated 30th July 2024.  Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse.  Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
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Road ahead closed – Bowel Obstructions

Road ahead closed – Bowel Obstructions

OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment.  Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'.  Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove.  However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…
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Curium™ announces FDA approval of BEXLUTRY lutetium Lu 177 dotatate for adults with SSTR-positive GEP-NETs

Curium™ announces FDA approval of BEXLUTRY lutetium Lu 177 dotatate for adults with SSTR-positive GEP-NETs

Update 15th September 2026 The FDA has approved lutetium Lu 177 dotatate injection (Bexlutry) for the treatment of adult patients with somatostatin receptor (SSTR)–positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut NETs.  BEXLUTRY™ is a radioligand equivalent approved through the FDA’s 505(b)(2) pathway targeting LUTATHERA® (lutetium Lu 177 dotatate), supported by published evidence and targeted bridging data that demonstrated a similar biological and chemical profile to a previously approved radiopharmaceutical therapy. Click here to read the news from Curium. Update 1st July 2026. This approval was being held up by legal processes after a patent dispute brought by…
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Did you hear the one about the constipated NET patient?

Did you hear the one about the constipated NET patient?

In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke.   However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments.  Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
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Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Reviewed and updated 5th July 2024 Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma, PPoma. Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load. There are other reasons that might be causing or contributing, including (but not…
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Somatostatin Receptors

Somatostatin Receptors

Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge. I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic! Somatostatin It's important to understand this hormone and…
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Metastatic Neuroendocrine Tumours – Incurable but treatable

Metastatic Neuroendocrine Tumours – Incurable but treatable

When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife…
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Neuroendocrine Cancer:  My 15 year experience with Lanreotide Ipsen

Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 12th May 2026.  I received injection number 200! Click here to read more. Update 11th Jan 2024.  Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen.  Clearly to distinguish its product from the generics now rolling out.  Not seen similar yet for Somatuline Depot (US).  Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here.  My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be…
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NHS England’s new Cancer Vaccine Launch Pad

NHS England’s new Cancer Vaccine Launch Pad

Update August 2025.  Patients in England with advanced head and neck cancer are being fast-tracked into a ground-breaking mRNA cancer vaccine trial, as the NHS expands its Cancer Vaccine Launch Pad (CVLP) to accelerate access to cutting-edge treatments. Update April 2025.  Melanoma patients in England get fast-track access to cancer vaccineUpdate March 2025. The UK government announced their intention to abolish NHS England and bring it back under the Department for Health and Social Care (DHSC) (i.e. a merger).  The change programme will take up to 2 years.  In the meantime, the blog will be updated with new nomenclature when further information is…
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I bet my flush beats yours?

I bet my flush beats yours?

Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…
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Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…
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Surgery is risky but so is driving a car

Surgery is risky but so is driving a car

I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs). To some extent, these debates continue,…
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Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

What happened to me? Since I was diagnosed in 2010, I've always known about a fibrosis issue in my retroperitoneal area.  It was identified on the very first CT scan which triggered my diagnosis.  Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness".  Followed by a statement saying that it was "almost certainly malignant".  The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance".  Interestingly the fibrosis itself does not appear…
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“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

If there's a word which is synonymous with cancer, it's chemotherapy.  It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'. I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease.  Cue - lengthy explanation!  I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy.  If you read any newspaper article about…
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Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome.  Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, or the levels of serotonin ae not controlled following diagnosis, can lead to an additional complication known as Hedinger Syndrome (also known as Carcinoid Heart Disease (CHD)). However, late diagnoses can present with CHD already in place and in some cases, may have led to…
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I look well but you should see my insides

I look well but you should see my insides

Note:  This text is based on my experience in 2015/2016 when I had my injections given at a chemotherapy ward in my local hospital.  I have now been receiving them at home since 2017. Original blog follows:I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away.  I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay.  I look all around; the temporary beds and the waiting room are full and all I can see are people who don't look as well as…
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Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

May 2024.  a refurbish from some of my early work in 2015.  I'm fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…
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‘Chinese Dumplings’ and Neuroendocrine Cancer

‘Chinese Dumplings’ and Neuroendocrine Cancer

Update of one of my posts from 2015 which was interesting in that year.  This is not really about a treatment which is available everywhere but was a novel approach by one of the world's most gifted and innovative NET surgeons. Please note this is not a nutrition post! One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology in June 2015.  I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer.This is an article about…
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Chemotherapy for Neuroendocrine Neoplasms

Chemotherapy for Neuroendocrine Neoplasms

By Ronny Allan – Living with Neuroendocrine Cancer Chemotherapy has a long and complicated history in the management of Neuroendocrine Neoplasms (NENs) (an umbrella term for both Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)).  Unlike many other cancers, most well‑differentiated NETs are relatively resistant to traditional cytotoxic chemotherapy. However, chemotherapy remains an important option for specific subtypes, particularly higher‑grade disease, and certain anatomical sites.  There's a myth that circulates the NET patient groups along the lines of "chemotherapy does not work for NETs". That's not entirely true or at best totally out of context.  However, it's true to say that…
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Surgery – the gift that keeps on giving

Surgery – the gift that keeps on giving

I first wrote this article in December 2014.  My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas.I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking can confer some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by…
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Piss off cancer, it’s 13 years since my liver surgery!

Piss off cancer, it’s 13 years since my liver surgery!

I'm still here I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate.  It’s amazing to think something that would eventually kill me without intervention, didn’t have…
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Clinical Trials –  AlphaMedix 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours

Clinical Trials – AlphaMedix 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours

Update October 2026.  This trial is currently on hold marked as "active, not recruiting".  It's my understanding the clinical trial has been halted until a review is complete (anecdotally from patients) Update 2nd November 2025 - NANETS output. Efficacy, Safety of 212Pb-DOTAMTATE in PRRT-Naïve Patients With GEP-NETs This is a follow on from the 8th October 2025 update below. Commentary by Dr Mary Maluccio from NOLA NETs. The figures looks great and you can read it or listen to her talking. Click here for that. The phase 3 trials will be PRRT naïve patients only (i.e. those who have had…
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Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…
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Do we need a new model for Carcinoid Crisis in NETs?

Do we need a new model for Carcinoid Crisis in NETs?

  Edit 2026. A collection of NET specialists issue new guidance for so called carcinoid crisis, click below: International expert consensus on perioperative management of carcinoid crisis | BJS Open | Oxford Academic https://share.google/pRChDu0b6iZnohW3b One thing they missed – changing the name. Note: Regional NET MDTs may adopt it immediately or continue what what is already part of local guidelines. Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead…
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Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients

Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients

There can be no doubt that the discovery of somatostatin receptors as a means to treat Neuroendocrine Tumours has been a huge success.  Additionally, scientists looked at a theranostic angle and provided somatostatin receptor based imaging for diagnosis and surveillance purposes. Many patients are prescribed somatostatin anlaogues shortly after diagnosis and this has led to a reduction in the morbidity that comes from active carcinoid syndrome and has reduced the incidence of carcinoid heart disease. More recently, the introduction of somatostatin receptor based PETs, taking over from the elderly Octreotide scans, has meant speedier and higher quality identification of NETs…
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Clinical Trial – Lutathera NETTER-2 Important Update

Clinical Trial – Lutathera NETTER-2 Important Update

UPDATE - June 5th 2024. [177Lu]Lu-DOTA-TATE plus long-acting octreotide versus high‑dose long-acting octreotide for the treatment of newly diagnosed, advanced grade 2–3, well-differentiated, gastroenteropancreatic neuroendocrine tumours (NETTER-2): an open-label, randomised, phase 3 study Summary There are currently no standard first-line treatment options for patients with higher grade 2–3, well-differentiated, advanced, gastroenteropancreatic neuroendocrine tumours. We aimed to investigate the efficacy and safety of first-line [177Lu]Lu-DOTA-TATE (177Lu-Dotatate) treatment.MethodsNETTER-2 was an open-label, randomised, parallel-group, superiority, phase 3 trial. We enrolled patients (aged ≥15 years) with newly diagnosed higher grade 2 (Ki67 ≥10% and ≤20%) and grade 3 (Ki67 >20% and ≤55%), somatostatin receptor-positive…
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US FDA Approves Radioequivalent Lu 177 Dotatate Product BRAVNETSA for GEP-NETs

US FDA Approves Radioequivalent Lu 177 Dotatate Product BRAVNETSA for GEP-NETs

Update 29 Sep 2026.  US FDA approves the product. The FDA determined BRAVNETSA to be bioequivalent and therapeutically equivalent to LUTATHERA (lutetium Lu 177 dotatate), according to a press release statement. BRAVNETSA is indicated for treating GEP-NETs, including foregut, midgut, and hindgut neuroendocrine tumors. BRAVNETSA was approved through the FDA’s Abbreviated New Drug Application (ANDA) pathway. As part of this review, BRAVNETSA is the only radiopharmaceutical the FDA has determined to be bioequivalent and therapeutically equivalent to the reference product, LUTATHERA.  This claim is strengthened by the fact that FDA designated it a Competitive Generic Therapy (CGT)Click here to read the…
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I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery Story It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body.  I can still remember…
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8th November 2010 – on the way to hospital for surgery, alert the crash team!

8th November 2010 – on the way to hospital for surgery, alert the crash team!

The Journey to the Hospital on 8th November didn’t go smoothly! I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November.  The technical reason for that is explained further below because I had been diagnosed with carcinoid syndrome which was a risk factor during major surgery.   Not a good start, as Chris was driving me to the hospital for my first surgery, the "my big surgery" as I call it. It was "debulking" i.e. get as much as possible.  I had been working since being diagnosed and…
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Systemic Treatments for Advanced, Well-Differentiated, Small-Bowel Neuroendocrine Tumors That Progress on Somatostatin Analogues

Systemic Treatments for Advanced, Well-Differentiated, Small-Bowel Neuroendocrine Tumors That Progress on Somatostatin Analogues

Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  Dr Jonathan Strosberg is another favourite of mine, not only because he is a prodigious researcher, writing and helping to write various studies on NETs.  Plus, I've actually met him! Jonathan R. Strosberg, MD Professor of Gastrointestinal OncologySection Head, Neuroendocrine Tumor DivisionChair, Gastrointestinal Department Research ProgramMoffitt Cancer CenterTampa, FL The discussion is centred on the following statement and question Small-bowel…
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Neuroendocrine Tumors and Carcinoid Syndrome: Individualizing Treatment to Match the Tumor Burden and Symptoms

Neuroendocrine Tumors and Carcinoid Syndrome: Individualizing Treatment to Match the Tumor Burden and Symptoms

Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on the following statement and questionSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment of neuroendocrine tumors (NETs) and carcinoid syndrome, but, when progression occurs, additional interventions are needed. Some of the novel strategies…
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Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

I thought this series might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on numerous scenarios, and I'll list them all below. What are some of the recent developments in the treatment of NETs and carcinoid syndrome, and what might be on the horizon?The first oneSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment…
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No flushes please!

No flushes please!

Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people's expectations, diagnosing Cancer isn't a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis.…
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The right awareness can lead to speedier diagnoses and save lives

The right awareness can lead to speedier diagnoses and save lives

ORIGINAL POST 20th May 2014.  Refreshed 25th March 2026 I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.  I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned…
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My treatment is a pain in the butt!

My treatment is a pain in the butt!

This title is a bit 'tongue in cheek' (....did you see what I did there?)  I'm very happy to have injection treatments for my stage IV cancer, I can think of far worse scenarios. When I was first diagnosed, the dreaded word 'Chemo' was discussed.  Actually, Chemo isn't particularly effective in treating low grade Neuroendocrine Cancer, although I've heard of cases where it has made a difference. It's mainly used in high grade (Grade 3) but also in Grade 2, particularly at the higher end of the grade 2 scale of KI67/Mitotic Count.  I was pleased later when that was…
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Meet Edison® Histotripsy System – powerful bubbles

Meet Edison® Histotripsy System – powerful bubbles

Please read this before asking questions Histotripsy is a new treatment, but it's an ablative technique rather than a drug.  It can be equated to liver embolization or conventional tumour ablation but uses what would appear to be a more effective targeted therapy.  It's early days, the fact that it has been approved by FDA (see wording below) is about all we know but this blog will be kept live. I get asked a lot of questions but some of the detail NET patients tend to ask is simply not available to me.   1. Where can I get this treatment? …
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Neuroendocrine Cancer: Troublesome Thyroids (Updated 2026 Edition)

Neuroendocrine Cancer: Troublesome Thyroids (Updated 2026 Edition)

Thyroid information disclaimerThis content is for general education and reassurance only. It is not a substitute for personalised medical advice, diagnosis, or treatment. Thyroid nodules, thyroid function tests, cytology categories (Bethesda/THY), and molecular tests (such as ThyroSeq, Afirma, or ThyroidPrint) all require interpretation by qualified clinicians who know your full medical history, imaging, pathology, and symptoms. Thyroid disease is common and highly individual. Most nodules are benign, and many thyroid abnormalities are incidental findings — especially in people who undergo frequent imaging. Decisions about biopsy, molecular testing, surgery, or surveillance should always be made with your endocrinologist, surgeon, or multidisciplinary…
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Just got (a) shot in the buttocks

Just got (a) shot in the buttocks

  I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable. I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!).  On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private…
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Who needs a gallbladder anyway?

Who needs a gallbladder anyway?

We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong with my gallbladder in 2010/2011, I was convinced it had to go. For info, gallstones incidence in the general population makes it considerably more common than NETs so it follows that some NET patients will have a gallstone issue totally unrelated to their NET.  Gallstones…
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Never mind the Bollocks – here’s the cancer

Never mind the Bollocks – here’s the cancer

I don't tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to be teased out. For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw)As you can see from the title above, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else.  You'll note they all begin…
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Lanreotide:  Original Ipsen injection devices vs Generic injection devices

Lanreotide: Original Ipsen injection devices vs Generic injection devices

Update September 2026 New generic version of Lanreotide is approved by US FDA.  I do not yet have confirmation of the injection device.  I'll update in due course but my guess is it will look like and be as efficient as the Ipsen version.  Click here to read about Amneal Lanreotide. The Amneal injection device looks identical to the reference drug Ipsen Lanreotide (Somatulie Depot/Autogel) and Cipla's version Update 7th September 2024 Following the US FDA approval of Cipla Lanreotide in 2021 using a Pharmathen syringe device (same as currently used by generic versions of Lanreotide in Europe), Cipla have…
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A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins.  Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use…
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NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny Allan What is a NET Specialist? "What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region.  Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor…
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Experimental drug for Gastric NET – Netazepide

Experimental drug for Gastric NET – Netazepide

Update Apr 2026.  Nothing has been published about this trial for some years.  I spoke to a leading UK Gastroenterologist who thinks it has been quietly dropped.  I will keep this blog open for a year or more just in case anything crops up.  Gastric NETs When I wrote my post entitled "Spotlight on Gastric Neuroendocrine Neoplasms", I explained what these were with some emphasis on the association with hypergastrinemia (elevated fasting serum gastrin levels) with Type 1 and 2 gNETs being differentiated by the settings in which this occurs.  This oversecretion is not the same as so called carcinoid…
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Treatment for Neuroendocrine Cancer: Beware of the alternatives

Treatment for Neuroendocrine Cancer: Beware of the alternatives

The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…
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A spotlight on Gastric Neuroendocrine Neoplasms (based on 2026 WHO Classification)

A spotlight on Gastric Neuroendocrine Neoplasms (based on 2026 WHO Classification)

What are Gastric NENs Unlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach.  The stomach lies at the bottom of your oesophagus and connects to the first part of the small intestine (the duodenum).  Clearly a key part of the gastrointestinal system, it processes food on its journey downwards. The stomach produces strong acid. This kills many microorganisms that might have been swallowed along with the food. It also contains special chemicals called enzymes. These are important for breaking down the food so it can be absorbed by the…
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