Well differentiated Archives

26 Mar 2026

0 Comments

Why liver transplant is back in the NET conversation

Patient Advocacy, TreatmentLiver metastases, Liver transplant, Well differentiated

Before you read this… This article is provided to support understanding of a complex and evolving topic. It explains how liver transplant is being explored in a very small number of NET patients, but it is not suggesting that this treatment is suitable for you or anyone else. Every NET case is unique. Only your own specialist team can assess your individual situation and advise on the options that may be appropriate for you. 1. Big picture: why liver transplant (LT) is back in the NET conversation Rationale: For a very small, highly selected subset of patients with unresectable liver-only…

03 Oct 2024

By Ronny Allan

5 Comments

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient AdvocacyBlue Book, Differentiation, Grading, High grade neuroendocrine neoplasm (NEN), High grade neuroendocrine tumour (NET), Ki-67, Large cell neuroendocrine carcinoma (LCNEC), MANEC, Merkel cell carcinoma, Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), Molecular markers, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Poorly differentiated, Small cell lung cancer (SCLC), Small cell neuroendocrine carcinoma (SCNEC), Somatostatin receptors (SSTR), Well differentiated

Reviewed and updated 3rd July 2026 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short. Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming. I too am guilty of having a large Facebook site falling into this category. It's little wonder that those with high grade disease can often feel like the forgotten patient group. …

03 Jul 2024

By Ronny Allan

1 Comment

The 50 shades of Neuroendocrine Neoplasms

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Differentiation, Foregut, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Grade, High grade neuroendocrine neoplasm (NEN), Hindgut, Hormones, Low Grade NETs, Metastatic Neuroendocrine Cancer, Midgut, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Poorly differentiated, Serotonin, Small intestine NET (SI NET), Stage, Well differentiated

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of 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. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…

02 Jul 2024

By Ronny Allan

1 Comment

Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Afinitor, Cabometyx, Cabozantinib, CB-839, Chemotherapy, Cometriq, ENETS, Everolimus, Lung Cancer, Metastatic Neuroendocrine Cancer, mTOR inhibitor, Multi tyrosine kinase inhibitors (TKIs), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, PI3K inhibitor, Poorly differentiated, Prostate Cancer, Proteasome inhibitors, Renal cell carcinoma (RCC), Sunitinib (Sutent), Tyrosine kinase inhibitor (TKI), Vascular endothelial growth factor (VEGF), Well differentiated

Please note this drug was approved and is now covered in a new blog - click here Clinical Trial history retained below for reference purposes BREAKING NEWS - 6th August 2024 Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors. Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors – The FDA assigned a Prescription Drug User Fee Act target action date of April 3, 2025 – – Application is based on results from…

12 May 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer? – 10 early questions to ask your doctor

Patient AdvocacyGrade, Hereditary cancer syndrome, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Poorly differentiated, Stage, Well differentiated

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out…

07 May 2024

By Ronny Allan

16 Comments

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

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Chemotherapy, Incurable cancer, Lymphedema, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Pulmonary embolism, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Well differentiated

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…

21 Apr 2024

By Ronny Allan

9 Comments

Chemotherapy for Neuroendocrine Neoplasms

Treatment5-Fluorouracil (5-FU), Afinitor, Cancer research, Capecitabine (Xeloda), CAPecitabine TEMozolomide (CAPTEM)., CAPTEM, Carboplatin, Chemotherapy, Cisplatin, Etoposide, Everolimus, FCarboSt, FOLFIRI, FOLFOX, High Grade NEC, Irinotecan (Campto), Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Paclitaxel (Taxol), Poorly differentiated, PRRT, Somatostatin analogues, Streptozotocin (Zanosar), Sunitinib (Sutent), Temozolomide (Temodal), Vepesid), Well differentiated, XELOX. Oxaliplatin (Eloxatin)

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…

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…

12 Feb 2024

By Ronny Allan

0 Comments

Lower grade higher stage NETs – slow motion, chronic and indolent?

Awareness, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Stage, Well differentiated

ContextI write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggressive NET relative (when Small Cell Lung Cancer is not included in the math). That said, the higher grades of NET can also be quite aggressive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a…

09 Mar 2023

By Ronny Allan

1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, InspirationAdvanced neuroendocrine cancer, Cancer of unknown primary (CUP), Cancer research, Differentiation, Poorly differentiated, Well differentiated

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to…

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…

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…

19 May 2017

By Ronny Allan

5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials and Research5-HIAA, Advanced neuroendocrine cancer, American Society of Clinical Oncology (ASCO), Bone metastases, Cancer of unknown primary (CUP), CAPecitabine TEMozolomide (CAPTEM)., Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Chromogranin A (CgA), CLARINET, Comorbidity, DUNE trial, Durvalumab, ELECT study, Flushing, Ga68-OPS202, Grading, Hormones, Incurable cancer, Ki-67, Lanreotide, Liver metastases, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, Pre-existing condition, PRRT, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Stage, Surgery, Theranostics, Well differentiated

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an…

Tag: Well differentiated