Neuroendocrine tumour (NET) Archives

23 Mar 2024

32 Comments

The Human Anatomy of Neuroendocrine Cancer

AwarenessAretha Franklin, Bowel cancer, Lung Cancer, Misdiagnosis, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Surgery

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or…

16 Mar 2024

By Ronny Allan

20 Comments

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient AdvocacyAdenoma, Advanced neuroendocrine cancer, Benign tumour, Cancerous tumour, Carcinoid tumour, Carcinoma, High grade neuroendocrine tumour (NET), Low Grade NETs, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Poorly differentiated, Surgery, Well differentiated

Reviewed and Updated 14th March 2026 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question. It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…

11 Mar 2024

By Ronny Allan

25 Comments

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Patient AdvocacyBlue Book, Cancer grading, Cancer staging, Carcinoid tumour, Differentiation, ENETS, Grade, High grade neuroendocrine tumour (NET), Intermediate grade NET, Ki-67, Large cell neuroendocrine carcinoma (LCNEC), Low Grade NETs, MEN1 syndrome, Mitotic count, Mitotic rate, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pathology, Poorly differentiated, Proliferative rate, Small cell neuroendocrine carcinoma (SCNEC), Stage, Surgery, TNM staging system, Well differentiated

Updated 1 August 2026 This section of my website has been published and regularly updated since 2015 but the most recent updates to the World Health Organisation (WHO) Classifications for Digestive and Thoracic Systems are about to be published. You may see these important publications called 'Blue Books'. Digestive Systems The main changes worth mentioning here is the addition of two new subtypes of Gastric NETs - Types IV and V, a genetic mutation and PPI related respectively. A larger update will be added when the publication is available online. Thoracic Systems (Lung/Thymus) The "multidisciplinary expert group" that drafted these…

21 Dec 2023

By Ronny Allan

5 Comments

Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trials and ResearchAcromegaly, Adrenocorticotropic Hormone (ACTH), Biased agonist, Carcinoid syndrome, Clinical trial, CRN00808, Cushing's disease, Hyperinsulinism, Lanreotide, Neuroendocrine tumour (NET), Octreotide, Sandostatin, Somatostatin analogues, Somatostatin receptors (SSTR)

What is Paltusotine Paltusotine is the first oral, once-daily, selectively targeted somatostatin receptor type 2 (SST2) agonist being developed for the treatment of acromegaly and carcinoid syndrome. The method of operation appears to be similar in that it wants to bind to somatostatin receptor 2 (SST2). In the meantime, see short video and note that the drug for Acromegaly is more advanced in pipeline terms (now in Phase 3). In terms of the effect on NETs, these tumours typically over express SST2, somatostatin type 2 receptors. Both SST2 and 3 are involved in apoptosis of neuroendocrine tumour cells.” Paltusotine’s high level…

11 Dec 2023

By Ronny Allan

0 Comments

Neuroendocrine Neoplasms – very often there are no perfect answers

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Heterogeneous, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis. I very much suspect this challenge is the same for many types…

20 Nov 2023

By Ronny Allan

0 Comments

Neuroendocrine Cancer – Clinical Esoterica

AwarenessCarcinoid crisis, Carcinoid syndrome, Desmoplasia, Gastrinoma, Glucagonoma, Hedinger syndrome, Hormones, Incurable cancer, Insulinoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, PPoma, Serotonin, Somatostatinoma, Thorson-Bioerck syndrome, Vasoactive intestinal peptide (VIP), Verner-Morrison syndrome, VIPoma, Whipple's triad, Zollinger-Ellison Syndrome

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include…

09 Nov 2023

By Ronny Allan

6 Comments

Piss off Cancer, it’s been 13 years since my “big surgery”

Awareness, InspirationAdvanced neuroendocrine cancer, Carcinoid syndrome, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Small intestine NET (SI NET)

D Day 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 and grading, in addition to the 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,…

08 Nov 2023

By Ronny Allan

0 Comments

When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

Patient AdvocacyGenetic testing, Neuroendocrine tumour (NET)

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 Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Jennifer R. Eads, MD Associate Professor of Clinical MedicinePhysician Lead, GI Clinical ResearchDirector, National Clinical Trials NetworkDirector, Penn Neuroendocrine Tumor ProgramDivision of Hematology and OncologyUniversity of Pennsylvania, Abramson Cancer CenterPerelman Center for Advanced Medicine Philadelphia, PA The discussion is centred on…

02 Nov 2023

By Ronny Allan

0 Comments

Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT)

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…

21 Oct 2023

By Ronny Allan

1 Comment

The right awareness can lead to speedier diagnoses and save lives

Awareness, Living with Neuroendocrine Cancer, TreatmentBowel cancer, Colorectal cancer, Lynch syndrome, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Surgery

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…

15 Oct 2023

By Ronny Allan

11 Comments

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

AwarenessCarcinoid syndrome, Carcinoid tumour, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Syndrome

Share this post please An awareness post from Ronny Allan The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some…

04 Oct 2023

By Ronny Allan

7 Comments

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship, Travel with RonnyNeuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.…

03 Oct 2023

By Ronny Allan

1 Comment

Who needs a gallbladder anyway?

Diet and Nutrition, TreatmentBile, Bile acid diarrhea, Bile acid malabsorption, Bile acid sequestrant, Bile duct, Bile salt, Gallbladder, Neuroendocrine tumour (NET), Small intestine NET (SI NET), Surgery

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 are…

27 Sep 2023

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Question, Clarify, Confirm

Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…

28 Aug 2023

By Ronny Allan

1 Comment

Neuroendocrine Cancer – normally slow but don’t be tricked!

AwarenessAdvanced neuroendocrine cancer, Carcinoid heart disease, Carcinoid syndrome, Hormones, Incurable cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, Quality of LIfe (QoL)

An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other…

27 Aug 2023

By Ronny Allan

15 Comments

Diagnosis – I’m no longer in control

Awareness, SurvivorshipDiagnosis, Incurable cancer, Iron Deficiency Anaemia, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Diagnosis The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist. There were many hints along the way, but it did not reduce the out of body experience I was having that day. This happens to other people but not me. I felt in control Rewind 2 months to May 2010...... I was happily working, getting stuff done, making things work. I had sufficient autonomy…

05 Aug 2023

By Ronny Allan

2 Comments

The Cancer Legacy of Steve Jobs?

Awareness, Clinical Trials and ResearchAdvanced neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic cancer, Pancreatic NET (PanNET)

Update June 2026. HistoSonics, the developer of the Edison® Histotripsy System and novel histotripsy therapy platforms, today announced the closing of a new financing round with participation from Reed Jobs and Yosemite, whose aim is to “make cancer non-lethal in our lifetime,” alongside several new strategic investors. Read more click hereClick here to read more about Histotripsy.Update February 2026. Today, Yosemite said that it had raised more than $200 million for a second fund that has a total targeted size of $350 million, with heavy-hitter investors that include biotech giant Amgen, Memorial Sloan Kettering, MIT and venture capitalist John Doerr. Powell…

26 Jul 2023

By Ronny Allan

4 Comments

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 13 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…

24 Jul 2023

By Ronny Allan

2 Comments

Sometimes you gotta climb that hill, even if you get wet!

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, NET syndromes, Neuroendocrine tumour (NET)

Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor. The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor. We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point. The clouds were moving fast over our heads, dropping their rain each time. We still had to climb to the top and it…

04 Jul 2023

By Ronny Allan

2 Comments

Joaquin Castro – US Congressman and NET patient

AwarenessIncidental diagnosis, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

Who is Joaquin Castro? I have an international following so many people outside of USA may not know much about Joaquin Castro. He is an American lawyer and Democratic politician who has represented Texas's 20th congressional district in the United States House of Representatives since 2013. The district includes just over half of his native San Antonio. He was diagnosed with a Small Intestine NET in July 2022 after an incidental finding while he was working in Spain. His car hit a boar on a highway the night before he was due to fly home to the US. He was…

03 May 2023

By Ronny Allan

3 Comments

Repeat after me: Maria Menounos has Neuroendocrine Cancer

AwarenessNeuroendocrine tumour (NET), Pancreatic cancer, pNET

Like many people from outside USA, I don't really know anything about Maria Menounos. For those in the same boat, let me confirm she is a very well-known personality in USA. A journalist, television presenter and actress. She has hosted Extra and E! News; she was a TV correspondent for Today, Access Hollywood, and co-hosted the Eurovision Song Contest 2006 in Athens, Greece. She also co-created and is currently CEO of online podcast series network AfterBuzz TV. She is currently signed to WWE where she has served as an ambassador since 2013. She hosts the podcast 'Conversations with Maria Menounos'.…

28 Apr 2023

By Ronny Allan

2 Comments

A spotlight on 5-HIAA

A Spotlight on NENs - Testing Series, Patient Advocacy5-HIAA, 5-HT, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Diagnosis, Functional tumour, Hedinger syndrome, Neuroendocrine cancer, Neuroendocrine tumour (NET), Plasma 5HIAA, Serotonin

Background. It's important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type. Some are more specific than others. A wide range of tests may be necessary at diagnosis if the type of NET is not clear. This post will cover one of the main tests to check for a common type of Neuroendocrine Tumour (NET) that is known to secrete excess amounts of the hormone Serotonin leading to symptoms indicative of Carcinoid Syndrome. These tumours are often labelled using the antiquated and misnomer term ‘Carcinoid Tumour’…

24 Apr 2023

By Ronny Allan

5 Comments

The NET Detectives

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Gastrinoma, Glucagonoma, Insulinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), PPoma, Somatostatinoma, Vasoactive intestinal peptide (VIP), VIPoma

The NET Detectives is an awareness post. Detecting NETs In general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in…

16 Apr 2023

By Ronny Allan

3 Comments

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Is this the face of a cancer patient? Yes, it is actually. This photo was taken on 31st October 2010. Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases. Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. …

01 Apr 2023

By Ronny Allan

0 Comments

RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Alternative therapies, Fructose intolerance, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET)

Summary - Many thanks for supporting my social media in March. I remain keen to hear any suggestions of the sort of thing you would like me to research and publish. I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances. Miranda and her parents are determined to help others despite the loss of Miranda. Click here…

16 Mar 2023

By Ronny Allan

0 Comments

Experimental drug for Gastric NET – Netazepide

Clinical Trials and Research, TreatmentAtrophic gastritis, Clinical trial, Gastric NET, Gastrin, Netazepide, Neuroendocrine tumour (NET)

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…

22 Feb 2023

By Ronny Allan

2 Comments

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

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, TreatmentAtrophic gastritis, Gastric NET, Gastrin, Gastrin pH, Gastrinoma, Hypergastrinemia, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pernicious anaemia, Proton pump inhibitors (PPI)

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…

03 Jan 2023

By Ronny Allan

2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing…

08 Dec 2022

By Ronny Allan

0 Comments

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

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). I once wrote a blog entitled "Four more years". I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you…

17 Oct 2022

By Ronny Allan

0 Comments

Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Patient Advocacy, TreatmentCarcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Neuroendocrine tumour (NET)

Introduction I found these 10 short video series from OncLive very useful. Each video ranges from 2 - 5 minutes long and is very easy to watch and digest. Not only a succinct primer on (so-called) carcinoid syndrome but also an update on the evolving approaches. And the series also includes information on Hedinger Syndrome (carcinoid heart disease) which can be caused by the effects of this syndrome. The panel includes some 'big hitter' names in our scientific community including: Satya (Nanu) Das, MD, MSCI (Oncologist) Jerome Zacks, MD (Cardiologist) Rodney Pommier, MD (Surgeon) Video list (click on the blue…

14 Sep 2022

By Ronny Allan

0 Comments

Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials and Research225Ac, Ac-225, Advanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Small cell lung cancer (SCLC), Targeted alpha-emitter therapy (TAT)

Update – 1 April 2026 RYZ401: New Alpha‑Emitter Trial (PRRT‑Naïve Only) In January 2026, RayzeBio (now part of Bristol Myers Squibb) opened a new first‑in‑human trial for RYZ401, titled “Study of RYZ401 in Subjects With Solid Tumors Expressing SSTRs” (NCT07165132). This Phase 1/2 study aims to: determine the recommended Phase 2 dose (RP2D) define the optimal treatment schedule assess safety and tolerability evaluate early signs of efficacy The trial includes NETs and other SSTR‑expressing solid tumours, including meningioma. Important: RYZ401 excludes anyone who has ever received PRRT (Lu‑177 or Y‑90). This makes it a PRRT‑naïve trial. 1 April 2026: The…

01 Sep 2022

By Ronny Allan

0 Comments

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials and Research, TreatmentNeuroendocrine tumour (NET), Pancreatic NET (PanNET), Surgery

One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN). In the most general terms, surgery is not recommended in tumours less than 2cm. Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery). Normally watching and waiting is recommended. I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cut Some patients opt (or push for) a non-guideline surgery regardless and as one other patient…

26 Jul 2022

By Ronny Allan

14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 12 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…

20 Jan 2022

By Ronny Allan

3 Comments

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Well differentiated

Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be). Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to…

09 Jan 2022

By Ronny Allan

0 Comments

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials and Research, Patient Advocacy, TreatmentASTX727, Clinical trial, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), Somatostatin receptors (SSTR), Well differentiated

What is the aim of this clinical trial?The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT). Patients entered into the study will receive ASTX727 orally up to 3 to 8 days prior to receiving Lutathera treatment. What is ASTX727?Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for adults with intermediate…

20 Nov 2021

By Ronny Allan

2 Comments

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Desmoplasia, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Retroperitoneal Fibrosis, Right hemicolectomy, Small intestine NET (SI NET), Surgery

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first…

17 Oct 2021

By Ronny Allan

0 Comments

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials and Research, Patient Advocacy, TreatmentCarcinoid, Carcinoid tumour, Neuroendocrine tumour (NET)

I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1). He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!). His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors". He quotes from a…

02 Oct 2021

By Ronny Allan

1 Comment

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, SurvivorshipAnxiety, Depression, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

I see a lot of emotional and anxiety issues in my private group. I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population. Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it. I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients. February 2020 - boom! Add in a global…

11 Sep 2021

By Ronny Allan

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Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Biopsy, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diagnosis, Everolimus, Ga68 PET/CT, Immunotherapy, Incurable cancer, Lanreotide, Liver embolization, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surufatinib, Targeted alpha-emitter therapy (TAT), Targeted therapy

Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…

02 Sep 2021

By Ronny Allan

6 Comments

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Diagnosis, Epidemiology, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Prognosis, Well differentiated

Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…

26 Jul 2021

By Ronny Allan

7 Comments

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 11 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in…

10 May 2021

By Ronny Allan

3 Comments

Clinical Trial: [212Pb]VMT-α-NET Alpha-emitter – Phase 1/2a Clinical Trial

Clinical Trials and Research212Pb, Clinical trial, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Targeted alpha-emitter therapy (TAT), VMT-𝛼-NET

Update 29th July 2026. Perspective Therapeutics received orphan medicinal product designation from the European Commission for [212Pb]VMT-α-NET, a treatment targeting gastroenteropancreatic neuroendocrine tumors (GEP-NETs). This status offers development and commercial benefits, including potential market exclusivity for up to 10 years, reflecting the drug's promise to address unmet needs in GEP-NET patients. The drug is currently in Phase 1/2a trials showing encouraging interim results. The designation supports further development and potential approval in Europe, aiming to improve treatment options for patients with limited therapies. Update 21 June 2025. Perspective Therapeutics Commences Recruitment for [212Pb]VMT-α-NET in the Third Dose Escalation Cohort…

04 Jan 2021

By Ronny Allan

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The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient AdvocacyBowel cancer, Carcinoid, Colon cancer, Colon NET, Colorectal cancer, Epidemiology, Incidence, Neuroendocrine tumour (NET), Rectal cancer, Rectal NET

Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data. For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…

13 Dec 2020

By Ronny Allan

2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Biomarker, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lu-177, Lutathera, Molecular markers, NETest, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Standardised uptake value (SUV), Tumour marker

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this…

18 Sep 2020

By Ronny Allan

1 Comment

Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

Clinical Trials and Research, TreatmentLanreotide, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

CLARINET FORTE is a prospective single-arm, open-label, exploratory, international Phase II study to explore the efficacy and safety of an increased Somatuline® Autogel® (lanreotide) dosing frequency (120 mg every 14 days) in patients with metastatic or locally advanced unresectable pancreatic NETs or midgut NETs, with centrally-accessed progression within the last two years while on a standard lanreotide regimen (120 mg every 28 days) for more than 24 weeks.Data announced in September 2020 at the 2020 European Society for Medical Oncology (ESMO), indicated the phase 2 results support a clinically meaningful benefit to a population of patients with high unmet medical need…

12 Sep 2020

By Ronny Allan

1 Comment

Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trials and ResearchImmunotherapy, Merkel cell carcinoma, Monoclonal antibodies, Neuroendocrine tumour (NET), Small cell lung cancer (SCLC), Targeted therapy, Tidutamab

UPDATE: 13th July 2022Xencor halted this clinical trial due to disappointing results. Click here to read moreXencor, a clinical-stage biopharmaceutical company developing engineered monoclonal antibodies for the treatment of cancer and autoimmune diseases, today announced that initial data from its ongoing Phase 1 dose-escalation study of tidutamab (XmAb®18087), an SSTR2 x CD3 bispecific antibody, in patients with neuroendocrine tumors (NETs) will be presented during the upcoming North American Neuroendocrine Tumor Society’s 2021 Multidisciplinary NET Medical Virtual Symposium (note - it was also presented at NANETS 2020). What are monocloncal antibodies? See here About Tidutamab Monoclonal antibodies are laboratory-produced molecules engineered to…

05 Sep 2020

By Ronny Allan

0 Comments

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine CancerBrain serotonin, Dopamine, Neuroendocrine tumour (NET), Oxytocin, Peripheral Serotonin, Serotonin

One of the featured pictures below is a sunflower from 2015, something I planted with my own hands, and it grew taller than me (not difficult), even taller than my garden fence (more difficult). Of course, I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it. Nonetheless, I still felt a remarkably close association with the outcome! It made me happy just to look at it! My most liked Facebook posts in 2020 (the year of COVID) related to plant…

24 Jul 2020

By Ronny Allan

10 Comments

Don’t be cavalier with a cancer diagnosis

Awareness, InspirationBiopsy, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. In fact it happened on 24th July 2010, 10 years to the date this post was published. (Spoiler alert - I'm still here). I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in…

24 Jun 2020

By Ronny Allan

0 Comments

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Multi tyrosine kinase inhibitors (TKIs), Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, Sunitinib (Sutent), Targeted therapy, Vascular endothelial growth factor (VEGF)

Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI). You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular…

22 Jun 2020

By Ronny Allan

0 Comments

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Clinical trial, Everolimus, Mammalian target of rapamycin (mTOR) inhibitor, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Targeted therapy

What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down. The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer. The drug is administered in oral form (tablet). The recommended dose for AFINITOR®…

Tag: Neuroendocrine tumour (NET)