Poorly differentiated Archives

27 Jun 2025

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DLL3 Expression in Neuroendocrine Neoplasms – an overview

Clinical Trials and Research, TreatmentDLL3, High grade neuroendocrine neoplasm (NEN), Large cell neuroendocrine carcinoma (LCNEC), Lung NETs, Neuroendocrine carcinoma (NEC), Poorly differentiated, Small cell lung cancer (SCLC)

Updated 20th August 2025 Background - Conventional therapeutic targets for neuroendocrine tumours (NETs) include somatostatin receptors (SSTRs), mammalian Target of Rapamycin (mTOR), Vascular Endothelial Growth Factor (VEGF), and tyrosine kinases. These pathways are crucial for tumour growth, survival, and angiogenesis. The most well known is SSTRs given that most NETs express these and allows targeted therapies such as somatostatin analogues (SSA) and peptide receptor radionuclide therapy (PRRT) to be used. Other targeted therapies like everolimus and sunitinib, which inhibit mTOR and tyrosine kinases respectively. Sunitinib also targets VEGF as does cabozantinib. For neuroendocrine carcinomas (Grade 3 poorly differentiated), targeting has…

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 Jan 2025 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

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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…

21 Apr 2024

By Ronny Allan

9 Comments

Chemotherapy for Neuroendocrine Cancer

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)

Edited and checked March 2026 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a 'standard of care' or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with poorly differentiated Neuroendocrine disease, by default labelled as Neuroendocrine Carcinoma (NEC). Many people think Chemotherapy has a short life span due to recent advances in medical science, some citing Immunotherapy as its replacement. However, it's far too early to write off chemotherapy which is still…

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 1st April 2026 This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of for Digestive Systems is about to be published. You may see these important publications called 'Blue Books'. The main changes worth mentioning here is the addition of two new types 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. The WHO Classification of Endocrine and Neuroendocrine Tumours Words are very important in NENs To enable…

29 Nov 2023

By Ronny Allan

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European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma

Latest ENETS GuidelinesLarge cell neuroendocrine carcinoma (LCNEC), Neuroendocrine carcinoma (NEC), Poorly differentiated, Small cell neuroendocrine carcinoma (SCNEC)

This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based on recent developments and study results. These recommendations aim to pave the road for more standardized care for our patients resulting in improved outcomes. However, it's true to say that the prognosis for differentiated Neuroendocrine Carcinomas (NEC) is generally poorer than the less aggressive Neuroendocrine Tumours (NET).Surgery can be of benefit for localized disease after extensive preoperative imaging. Carboplatin in combination with etoposide is recommended as first-line treatment for metastatic disease. Irinotecan with fluoropyrimidines has…

01 Jun 2023

By Ronny Allan

2 Comments

Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Clinical trial, High grade neuroendocrine tumour (NET), Immunotherapy, Neuroendocrine carcinoma (NEC), Poorly differentiated

Updated 13th November 2024Glad you found this interesting blog. However, I must warn you that it is in jeopardy due to the following announcement intercepted by my google agents. Read more by clicking here.I will monitor this for further information and update as necessary. Who are 23andMe?I personally had not heard of 23andMe but many people in North America might have. When you first look at what they do, you can be excused for thinking they are just another 'Ancestry' company, but they are more than that. They also get involved in genetics and health. To quote their marketing "we’re all of…

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…

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…

21 Feb 2017

By Ronny Allan

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Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Cisplatin/Etoposide, CLARINET, Everolimus, Food and Drug Administration, Ga68 PET/CT, Ga68-DOTATATE, Gastrointestinal NET (GI-NET), High grade neuroendocrine tumour (NET), Immunotherapy, Lanreotide, Liver directed therapy, Lu-177, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, Midgut, NETSPOT, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Octreotide scan, Pathology, Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, PRRT, RADIANT, Somatostatin analogues, Sunitinib (Sutent)

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…

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