Metastatic Neuroendocrine Cancer Archives

14 Jul 2026

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14th July 2026 – Ronny Allan hits 3 million blog views!

Patient AdvocacyMetastatic Neuroendocrine Cancer

Today, 14th July 2026, I can confirm the 3 million views milestone has been reached. MASSIVE THANKS to you guys for reading and sharing. When I first set up this blog in April 2014, it was just to help spread awareness (....and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 10,000 or 100,000 views. When I reached 1 million, I was totally flabbergasted. When I reached 2 million, I was a bit proud. I just…

18 Jun 2026

By Ronny Allan

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The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan

AwarenessAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

"Invisible cancer" typically refers to malignancies that evade early detection or disguise themselves as other common, non-life-threatening ailments. This term is very frequently associated with Neuroendocrine Tumours which are very often difficult to spot on standard imaging and blood tests. When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. Something was wrong with me. But it wasn't stopping me do stuff. I'd look in the mirror doing my tie up, ironically the facial flushing was the disease staring me…

02 Jan 2026

By Ronny Allan

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Ronny Allan – a review of my blog activity December 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Here is the monthly summary of December 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. December is normally a quiet month, often the quietist month of the year. However, this year, it was the best figures for the whole of 2025. I think it came on the back of a very productive November as most of them are awareness orientated posts. Some excellent technical stuff too. The month turned out 26,500 blog views. The selection of top posts really shows the breadth of subjects applicable to…

14 Dec 2025

By Ronny Allan

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Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer

My diagnosis came with many strange words including, "carcinoid" and "neuroendocrine" ......... can you spell that please, I said to the doctor. I had a low ki67 figure from a tissue sample taken percutaneously from my liver, it seemed pretty good that I was only 5 in a range of 0-100 but somehow the word 'indolent' did not seem to match the long list of metastases including the mesentery, the liver, the retroperitoneal cavity, the armpit, the clavicle. If that was not enough, there was also a long list of secondary effects including but not limited to "mesenteric fibrosis", "retroperitoneal…

14 Dec 2025

By Ronny Allan

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Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Fatigue, Invisible illness, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine tumour (NET)

Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan Thanks for reading Ronny I also have one about Lanreotide (or "butt darts" in general) - click here Click here and answer all questions to join my private Facebook group Check out my WEGO Health Awards Check out my Glossary of Terms - click here Please Share this post for Neuroendocrine Cancer awareness and to help another patient

28 Apr 2025

By Ronny Allan

1 Comment

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Anxiety, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Diet, Flushing, Hormones, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Somatostatin analogues

An opinion post When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after…

15 Mar 2025

By Ronny Allan

29 Comments

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAcid reflux, Advanced neuroendocrine cancer, Amylase, Antiacids, Barrett's Esophagus, Bile acid malabsorption, Bile acid sequestrant, Carcinoid syndrome, Carcinoid tumour, Cholestyramine, Exocrine function (pancreas), Exocrine pancreatic insufficiency, Fecal elastase test, Fecal fat, H2 receptor antagonist (H2RA), Hormones, Lanreotide, Lipase, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Nutrizym, Octreotide, Pancrease, Pancreatic cancer, Pancreatic insufficiency, Pancreatic NET (PanNET), Pancreatin, Pancrex, Pepcid (Famotidine), Protease, Proton pump inhibitors (PPI), Quality of LIfe (QoL), Small intestine bacterial overgrowth (SIBO), Somatostatin analogues, Steatorrhea, Surgery, Total gastrectomy, Total pancreatectomy, Zantac, Zollinger-Ellison Syndrome

After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus…

06 Mar 2025

By Ronny Allan

1 Comment

Health Union Accredits Ronny Allan as a Certified Patient Leader – February 2025

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Survivorship

Health Union accredits Ronny Allan This was announced in summer 2023 but it took me a while to engage due to my many commitments (including some big personal stuff to sort out) I had a false start, many things took priority for a while but early 2025, I was encouraged to complete it and finally crossed the line in February 2025. Read my Facebook announcement of certification - click here. My formal certificate was recently received, see below! Health Union Acquires WEGO Health - WEGO Health WEGO Health had the largest network of patient leaders in the world, clearly…

26 Feb 2025

By Ronny Allan

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Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

A spotlight on NENs, Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Blue Book, Carcinoid syndrome, Carcinoid tumour, Cushing's syndrome, Diagnosis, Ectopic Cushing’s syndrome (ECS), Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Glucagonoma, Hormones, Incurable cancer, Insulinoma, Metastatic Neuroendocrine Cancer, Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Somatostatinoma, VIPoma

The riddle. For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve…

20 Feb 2025

By Ronny Allan

18 Comments

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid syndrome, Carcinoid tumour, Distant metastatis, Hypothyroidism, Ki-67, Levothyroxine, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Sternoclavicular joint, Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…

19 Feb 2025

By Ronny Allan

2 Comments

The Other 5 E’s by Ronny Allan

Inspiration, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, Hormones, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Somatostatin analogues, The 5 E's

I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 Es Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of…

17 Feb 2025

By Ronny Allan

7 Comments

The NETest® – can it replace Chromogranin A and more?

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid tumour, Chromogranin A (CgA), Liquid biopsy, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Tumour marker

See Summary below for a quick updateUpdate 8th Dec 2025. New York State Department of Health Grants Approval of Wren Laboratories’ NETest® 2.0 for Clinical Use Clinically Validated Performance In validation across 3,042 NET patients and 1,084 controls/other cancers, NETest 2.0 demonstrated: Sensitivity: 93% Specificity: 85% Positive predictive value: 95% Negative predictive value: 82% Overall accuracy: 91% These results support broad clinical utility, including: Accurate detection across all NET grades and stages Identification of minimal residual disease, recurrence, and progression Monitoring and prediction of therapeutic response, including 177Lu-PRRT Prognostic value for progression-free and overall survival Detection of neuroendocrine differentiation in select epithelial tumors Click…

16 Feb 2025

By Ronny Allan

2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, CT scan, Diarrhea, Everolimus, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreoscan (Octreotide scan), Octreotide, Pancreatic cancer, Pseudomyxoma peritonei (PMP), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surgery, Terminal cancer

Edited and refreshed 13th January 2026 There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue. They are a heterogeneous group of tumours. Read more…

15 Feb 2025

By Ronny Allan

10 Comments

Genetics and Neuroendocrine Tumours

Awareness, Living with Neuroendocrine Cancer, SurvivorshipAutosomal dominant, Benign, Carney-Stratakis syndrome (CSS), Chromaffin cells, Familial medullary thyroid cancer (FMTC), Familial NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Genetic testing, Genetics, Germline genetic mutations, Hereditary cancer syndrome, Hormones, Incurable cancer, Lung NETs, Malignant, MEN1 syndrome, Metastatic Neuroendocrine Cancer, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurofibromatosis type 1 (NF1), Paraganglioma, Pheochromocytoma, Pituitary NET (PitNET), Quality of LIfe (QoL), Tuberous sclerosis (TSC)

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours…

26 Jan 2025

By Ronny Allan

5 Comments

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient AdvocacyMetastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Thousands of people are diagnosed with cancer every day. Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services. Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured. The problem with certain cancer symptoms is that they are not…

22 Jan 2025

By Ronny Allan

7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Curative surgery, Cytoreductive, Debulking surgery, Desmoplasia, Do no harm, Incurable cancer, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Pancreatic pseudocyst, pNET, Prognosis, Quality of LIfe (QoL), Small intestine NET (SI NET), Surgery, Tumor board

Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me). Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors. If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…

21 Jan 2025

By Ronny Allan

12 Comments

Neuroendocrine Cancer – my liver surgery April 2011

Treatment5-HIAA, Adhesions, Advanced neuroendocrine cancer, Carcinoid syndrome, CT scan, Debulking surgery, Lanreotide, Laparoscopic surgery, Liver embolization, Liver metastases, Metastatic Neuroendocrine Cancer, Octreotide, Octreotide scan

From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took…

18 Jan 2025

By Ronny Allan

0 Comments

Ronny Allan – Every picture tells a story

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Afinitor, Anxiety, Biopsy, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Surgery

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…

15 Jan 2025

By Ronny Allan

28 Comments

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

TreatmentAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, ELECT study, Flushing, Gastrinoma, Glucagonoma, Hormones, Insulinoma, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Quality of LIfe (QoL), Somatostatin analogues, Somatuline Autogel (US: depot), VIPoma

Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone over secretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there…

14 Jan 2025

By Ronny Allan

8 Comments

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship111In-DTPA-D-Phe1, 123I-Metaiodobenzylguanidine (mIBG), 131I-Metaiodobenzylguanidine (mIBG), 18F-FDG, 18F-FDOPA, Advanced neuroendocrine cancer, CT enterography, CT scan, Diagnosis, DOTA-NOC, DOTA-TATE, DOTA-TOC, Echocardiogram, Endoscopic ultrasound (EUS), Endoscopy, Explorer PET scan, Fluoro-18-L-Dihydroxyphenylalanine, Ga68 PET/CT, Magnetic resonance imaging (MRI) scan, Medullary thyroid cancer (MTC), Metastatic Neuroendocrine Cancer, Neuroblastoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreoscan (Octreotide scan), Octreotide scan, Paraganglioma, Pentetreotide, Pheochromocytoma, Somatostatin analogues, Somatostatin receptor scintigraphy (SRS), SPECT, SSTR-PET, Survivorship, Technetium-99m (Tc-99m), Ultrasound, X-ray

Updated December 2025 Background Scanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan…

13 Jan 2025

By Ronny Allan

2 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

TreatmentCarcinoid tumour, CT guided aspiration, Debulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Nutrition, SI NET, Small intestine NET (SI NET)

The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well. My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1. If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed was the urine…

11 Jan 2025

By Ronny Allan

3 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Survivorship, TreatmentDebulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, SI NET, Small intestine NET (SI NET)

8th - 26th November 2010 Memories of my 18-day stay in the hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days when morphine was in control. For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease. In fact, I now know from my own research that NETs are one of a small number of cancers for which surgical debulking can in many…

03 Dec 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm…

29 Nov 2024

By Ronny Allan

7 Comments

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyMetastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice…

28 Nov 2024

By Ronny Allan

0 Comments

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer5-HIAA, 5-Hydrotryptophan (5-HTP), B12, B3, Carcinoid syndrome, Carcinoid tumour, Hormones, Malabsorption, Melatonin, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Serotonin, Tryptophan

I have been posting this every year on last Thursday in November and I kept forgetting that other countries other than USA (and Territories of the United States) also do Thanksgiving but mostly on different dates. This includes (but is probably not limited to): Canada, Brazil, Grenada, Liberia, Saint Lucia, Leiden (Netherlands), Norfolk Island (Australia). I hope you all had/have a great Thanksgiving Day! Turkey and Sleep Now ........ I hate to stereotype but I guess a lot of you might be eating turkey on Thanksgiving Day? No Thanksgiving is complete without a turkey at the table (... so I'm told!). …

24 Nov 2024

By Ronny Allan

29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, ENETS, Hormones, Immunotherapy, Incurable cancer, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, PRRT, Quality of LIfe (QoL), SEER, Somatostatin analogues, Surgery

Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…

23 Nov 2024

By Ronny Allan

4 Comments

Carcinoid – What’s in a name?

AwarenessCarcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Carcinoma, Metastatic Neuroendocrine Cancer, Neoplasm, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Noid

A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…

28 Oct 2024

By Ronny Allan

17 Comments

Things to do today

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Chronic condition, Incurable cancer, Invisible illness, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL)

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine.…

26 Oct 2024

By Ronny Allan

10 Comments

PRRT – The Sequel? Alpha-emitter PRRT for Neuroendocrine Tumours (NET)

Clinical Trials and Research212Pb-AR-RMX, Ac-225, Advanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Nuclear medicine, Peptide receptor radionuclide therapy (PRRT), PRRT, Radioimmunotherapy, Radionuclide, Somatostatin analogues, Targeted alpha-emitter therapy (TAT)

Updated and reviewed June 2026. Alpha‑emitter PRRT is emerging as the next major evolution of peptide receptor radionuclide therapy. Instead of using a beta‑emitting isotope such as 177Lu, these new approaches use alpha‑particle–emitting isotopes like 212Pb or 225Ac. The goal is simple: deliver more powerful DNA‑damaging radiation directly into tumour cells while keeping the impact on surrounding tissues as low as possible. This is still experimental, but the science is compelling — and the early clinical signals are strong enough that alpha‑emitter PRRT is now considered one of the most important areas to watch in NET research. How alpha‑emitter PRRT…

09 Oct 2024

By Ronny Allan

11 Comments

Neuroendocrine Cancer – Liver directed therapy

TreatmentAdvanced neuroendocrine cancer, Arterial embolization, Bland liver embolization, Carcinoid crisis, Cryoablation, Drug-Eluting Beads DEB-TACE, High-intensity focused ultrasound (HIFU), Hormonal crisis, Liver directed therapy, Liver embolization, Liver metastases, Metastatic Neuroendocrine Cancer, Radioembolization, Selective Internal Radiotherapy (SIRT), Trans arterial embolization (TAE), Transarterial chemo embolization (TACE), Transarterial radioembolization (TARE)

May 2026. Updated to include Transarterial Chemoperfusion (TACP) Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs). Spread to the liver…

29 Sep 2024

By Ronny Allan

2 Comments

F*** you cancer, 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)

On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking…

06 Sep 2024

By Ronny Allan

11 Comments

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Advanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Distant metastatis, Hormones, Hospice care, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Palliative care, Palliative treatment, Quality of LIfe (QoL), Syndrome

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…

30 Aug 2024

By Ronny Allan

7 Comments

Neuroendocrine Cancer: I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipIncurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal! And I make no apologies for my approach. So, when I wrote my blog post "Living with…

25 Aug 2024

By Ronny Allan

0 Comments

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

TreatmentAdvanced neuroendocrine cancer, Carcinoid tumour, High grade neuroendocrine tumour (NET), Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Small intestine NET (SI NET), Surgery

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…

08 Aug 2024

By Ronny Allan

6 Comments

Neuroendocrine Cancer – I didn’t hear it coming

AwarenessCarcinoid tumour, Diagnosis, Differential diagnosis, Early Diagnosis, Incidental diagnosis, Invisible illness, Late Diagnosis, Metastatic Neuroendocrine Cancer, Misdiagnosis, Neuroendocrine cancer

A Neuroendocrine Cancer awareness post by 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. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed…

01 Aug 2024

By Ronny Allan

2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Appendiceal NET, Carcinoid syndrome, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Gastric NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Immunotherapy, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic cancer, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

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…

26 Jul 2024

By Ronny Allan

50 Comments

I’m still here

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancerversary, Carcinoid syndrome, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Prognosis, Quality of LIfe (QoL), Survivor

I didn't expect to be here but I am I was diagnosed with metastatic Neuroendocrine Tumours (NETs) on 26th July 2010. Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do. There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis,…

25 Jul 2024

By Ronny Allan

2 Comments

A Neuroendocrine Cancer diagnosis: I didn’t even feel ill

Awareness, Inspiration, Patient AdvocacyBiopsy, 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. 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 about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp…

21 Jul 2024

By Ronny Allan

9 Comments

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UK As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's…

18 Jul 2024

By Ronny Allan

17 Comments

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Bowel cancer, Carcinoid tumour, Lung Cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Stomach cancer

I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin. I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors. About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the…

14 Jul 2024

By Ronny Allan

3 Comments

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid tumour, Chronic condition, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defence it was…

13 Jul 2024

By Ronny Allan

5 Comments

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdhesions, Advanced neuroendocrine cancer, Bowel obstruction, Carcinoid tumour, Colonoscopy, Diverticulitis, Incurable cancer, Lactulose, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery

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…

08 Jul 2024

By Ronny Allan

8 Comments

“What are you doing this afternoon”

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Biopsy, Blood test, Cancer survivor, Carcinoid syndrome, Carcinoid tumour, CT scan, Desmoplasia, Diagnosis, Diarrhea, Flushing, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, in my head, I wasn't actually ill. .... two…

05 Jul 2024

By Ronny Allan

19 Comments

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, BAM, Bile acid malabsorption, Bile acid sequestrant, Bile salt, Carcinoid syndrome, Chemotherapy, Constipation, Creon, Diet, Differential diagnosis, Flushing, Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, IBS, Imodium, Incurable cancer, Lanreotide, Loperamide hydrochloride, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, Pancreatic enzyme replacement therapy (PERT), PPoma, Quality of LIfe (QoL), Radiotherapy, Serotonin, Somatostatin analogues, Somatostatinoma, Steatorrhea, Supplements, Surgery, Telotristat ethyl (Xermelo), Terminal ileum, Tryptophan hydroxylase (TPH), VIPoma

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…

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…

01 Jul 2024

By Ronny Allan

4 Comments

Neuroendocrine Cancer: No one gets it until they get it!

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous group of cancers ranging from some quite indolent versions…

27 Jun 2024

By Ronny Allan

9 Comments

Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, C‑Reactive Protein (CRP), Coeliac disease, Cognitive behavioural therapies (CBT), Constipation, Erythrocyte sedimentation rate (ESR), Gastroenterologist, Haemoglobin (hemoglobin), Hormones, IBS-C, IBS-D, IBS-M, Incomplete emptying, Irritable bowel syndrome (IBS), Metastatic Neuroendocrine Cancer, Misdiagnosis, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL)

Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? In preparation for writing this blog post, I…

22 Jun 2024

By Ronny Allan

1 Comment

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…

17 Jun 2024

By Ronny Allan

23 Comments

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Cancer grading, Cancer staging, Ga68 PET/CT, Incurable cancer, Lanreotide, Low Grade NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Palliative care, Palliative treatment, Prognosis, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Terminal cancer

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…

Tag: Metastatic Neuroendocrine Cancer