Living with Neuroendocrine Cancer Archives

30 Dec 2025

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A review of 2025 on RonnyAllan.NET

Awareness, Living with Neuroendocrine Cancer, Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my advocacy work. I had to spend quite a bit of time looking after my brother's affairs when he was diagnosed with dementia and is now living in residential care. That took a lot of my free time away, not that I resent it, it's just one of those things you just have to do, despite the stress it entails. I also have a glitch on my website affecting iPhones which I'm slowly working through. …

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.NET 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 Thanks for reading. Ronny Blog Facebook. Like this page please. Personal Facebook. Like this page please. Awareness Facebook Like this page please. Follow me on X (formerly twitter) Check out my online presentations Check out my WEGO Health Awards Check out my Glossary of Terms - click here Please Share this post for Neuroendocrine Cancer awareness and to…

31 Oct 2025

By Ronny Allan

15 Comments

Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid syndrome, Chemotherapy, Diet, Genetic testing, Hormones, Incurable cancer, Malignant, Multidisciplinary team (MDT), Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Palliative care, Quality of LIfe (QoL), special, Surgery, Thorson-Bioerck syndrome, Tumor board, UKINETS

Scroll down to check out the doctors list just below Important note The accuracy of these lists depends on the accuracy of the sources. If you think the source is wrong, let them know, not me. However, you can also join my private Facebook group and someone in there will often be more up to date than the source! To the best of my knowledge, this the only attempt at a worldwide list of specialists. Finding experts Many people ask for a definition of a "NET Specialist". There's also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE).…

30 Oct 2025

By Ronny Allan

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I made it to 70!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer

I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…

13 Oct 2025

By Ronny Allan

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10 Random Blog posts Set 1 – RonnyAllan.NET

Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, The NET Effect Series, TreatmentNeuroendocrine cancer

10 Random Blog posts Set 1 - RonnyAllan.NET WelcomeA new series of random blogs that are not only informational, but also relevant. Carefully selected by the author.Thanks for reading. Feedback welcome. Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption The Cancer Legacy of Steve Jobs Cancer-related fatigue (CRF) - The NET Effect Jimmy Buffett 1946-2023 - Neuroendocrine Carcinoma (Merkel Cell Carcinoma) Cancer Ablation Meet Edison® Histotripsy System - powerful bubbles Lower grade higher stage NETs - slow motion, chronic and indolent? Neuroendocrine Cancer Awareness - let’s move into the 21st century Living with NETs - nobody…

16 Aug 2025

By Ronny Allan

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2025 Surveillance Update from Ronny Allan: “No evidence of progressive disease”

Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Small intestine NET (SI NET)

It's only a couple of weeks since I celebrated my 15th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2. Thinking back to that period of my life, I'm happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think it's a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor. I didn't take this diagnosis lying down, I…

07 Aug 2025

By Ronny Allan

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Sometimes you gotta climb that hill because it’s a better view!

Living with Neuroendocrine Cancer, Sometimes you gotta climb that hill!, Survivorship, Travel with RonnyMalvern Hills, Survivorship

For those who are not familiar with my "sometimes you gotta climb that hill" series, let me explain one important thing before you read. These posts are metaphorical posts. The "hill" represents a challenge, often one that people with cancer have to face. It is not a blog about physically walking up a hill - although I do use my outdoor challenges to get the point over (plus many of my followers prefer my exploits to my technical articles!). I always get a lot of personal satisfaction and self administered mental health treatment by taking part, and that is also…

24 Jul 2025

By Ronny Allan

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My NET is different than yours

A spotlight on NENs, Awareness, Living with Neuroendocrine CancerCarcinoid syndrome, Carcinoid tumour, Heterogeneity, Heterogeneous, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

When you manage a large support group, you see a lot of posts. Many of them highlight a lack of knowledge about the heterogeneity of Neuroendocrine Neoplasms. The issue is not always with those answering the question but often it is the person asking the question. Sometimes intervention is needed to focus responses. So, what are the key issues? Read on..... If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….” “Heterogeneous” means consisting of dissimilar parts or elements, essentially meaning “mixed” or “diverse,” but I used the term…

16 Jul 2025

By Ronny Allan

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Ronny Allan’s Glossary of Terms (Basic Edition)

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, The NET Effect Series, TreatmentNeuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top cancer/Neuroendocrine Cancer sites. This version is a simple combination of an intelligent search (e.g. type first character to filter etc) plus a simple long list of all the terms in my repository. But each has a link which will direct you to the definition of the term plus where applicable, links to any of my articles where I have tagged this term (therefore providing added context).Please note I’m constantly working on the repository to clean up all definitions, adding…

26 Apr 2025

By Ronny Allan

6 Comments

Catch up on Ronny Allan’s Blog

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, TreatmentNeuroendocrine cancer

You guys lead busy lives but the aim of this article is to help you catch up. Below are the most read posts in the last 7 days. Click on anything that takes your fancy. Many thanks. To read any article, just click on the title/picture below Latest from Instagram https://www.instagram.com/neuroendocrine.cancer.ronny/ Select of category of posts you'd like to see 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), or conveyed by me on any social media or presentation, should be interpreted as…

23 Mar 2025

By Ronny Allan

8 Comments

Living with Cancer: Don’t cross the bridge until you get to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Scanxiety

It's normal to be worried when you read something online including a scan report which has words that frighten you, when you notice a slightly high blood test. Or if read something bad about one type of NET or what has happened to someone with a different type of NET as you; and you think this might also apply to you. But too much worrying about something which is more likely to not be a problem or will almost certainly not happen to you; is not a good place to be. Don't cross the bridge until you come to it,…

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…

14 Mar 2025

By Ronny Allan

6 Comments

Letter from America

Awareness, Inspiration, Living with Neuroendocrine CancerNeuroendocrine cancer

I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail. Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header…

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…

20 Feb 2025

By Ronny Allan

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Abseil for NETs – in memory of Heidi and Gary Veacock

Fundraising, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer

Such Sad news. I was totally shocked to hear some heart-breaking news late on 5th February 2026. I had been online friends with Gary Veacock, a recently retired Lt Col in the Royal Marines. As a veteran, the comradeship was instant. Initially he would ask questions about NET and my experience. I guess he was keen to hear about others experiencing the same condition as his wife Heidi. Later on, I helped him fundraise for Heidi via a Royal Marines sponsored abseil organised by Gary with all proceeds going to Royal Free London, one of the top NET centres of…

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…

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…

05 Feb 2025

By Ronny Allan

8 Comments

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Scanxiety, Stress

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…

28 Jan 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Not all answers are black and white

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect SeriesNeuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

I get lots of questions. Some are direct to me by a messenger type app. Many are posed in my private group - these are normally always directed at the entire group but often I'm tagged in, a giant hint that I'm expected to reply. I don't mind too much but my answer is generally the same whichever scenario. Where I'm not tagged, I'm still happy to answer along with others in the same post. Sometimes I only comment as part of my moderating role in the group. In the early days, I would generally contribute to most posts but…

24 Jan 2025

By Ronny Allan

16 Comments

Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment64Cu-DOTATATE, Axillary nodes, Bone metastases, CT scan, Degenerative bone disease, Ga68 PET/CT, Liver metastases, NETSPOT, Neuroendocrine cancer, Octreotide scan, Overdiagnosis, Physiological uptake, Radionuclide, Retroperitoneal Fibrosis, SEER, SomaKit TOC, SSTR-PET, Subpectoral lymph node, Supraclavicularfossa (SCF) lymph nodes, Surveillance, Ureter

I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive - but read on....). In 2018, my 6…

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…

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),…

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…

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…

21 Nov 2024

By Ronny Allan

6 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine CancerCDKN1B, Endocrine, Familial medullary thyroid cancer (FMTC), Genetics, Hereditary cancer syndrome, MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, MEN4 syndrome, MEN5 syndrome, MENX, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Paraganglioma, Parathyroid gland, Pheochromocytoma, Pituitary gland

First published 2015, updated for 2025. Overview We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects. MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is…

06 Nov 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine CancerAntidepressant, Anxiety, Carcinoid syndrome, Diabetes, Flushing, Hyperhidrosis, Hyperthryroidism, Hypoglycemia, Menopause, Neuroendocrine cancer, Night sweat, Pheochromocytoma, Sleep hyperhidrosis, Sweating

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the…

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…

22 Oct 2024

By Ronny Allan

1 Comment

6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid tumour, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrassed, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right? Wrong, the cancer story is changing. Sure, many people do die of cancer, and that's heartbreakingly sad. But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…

22 Oct 2024

By Ronny Allan

6 Comments

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdrenal medulla, Adrenaline, Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Cardiopulmonary hemodynamic instability, Catecholamines, Chromaffin cells, Cortisol, Epi pens, Epinephrine, Hormonal crisis, Hormones, Hypertension, Hypotension, Intraoperative hypertensive crisis, NET syndromes, Neuroendocrine tumour (NET), Norepinephrine, Pheochromocytoma, Pressor amines, Serotonin, Somatostatin analogues, The 5 E's, Thorson-Bioerck syndrome, Vasoactive amines, Vasoactive peptides

Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…

22 Sep 2024

By Ronny Allan

9 Comments

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentConstipation, Depression, Dry skin, Fatigue, Goitre, Graves’ disease, Hashimoto's disease, Heat intolerance, Hormones, Hyperthryroidism, Hypothyroidism, Lanreotide, Levothyroxine, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Palpitation, Pituitary gland, Quality of LIfe (QoL), Radioactive iodine, Somatostatin analogues, Sweating, Thyroid stimulating hormone (TSH), Thyroiditis, Thyroxine (T4), Triiodothyronine (T3)

From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid…

15 Sep 2024

By Ronny Allan

2 Comments

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyNeuroendocrine cancer, Quality of LIfe (QoL)

I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many. I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor i.e.…

11 Sep 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer surveillance, Scanxiety

It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…

07 Sep 2024

By Ronny Allan

2 Comments

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdrenal glands, Benign NET, Breast NEN, Bronchopulmonary Neuroendocrine Neoplasms (BP NEN), Gastrointestinal NET (GI-NET), Genito-urinary NET, Lung NETs, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Paraganglia, Parathyroid NET, Parotid gland NET, Skin NET, Thyroid NET, World Health Organisation (WHO)

One of the most controversial aspects of 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). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant. Any standard cancer nomenclature definition of the word…

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…

03 Sep 2024

By Ronny Allan

3 Comments

Not every illness is visible

Awareness, Living with Neuroendocrine Cancer, SurvivorshipBowel surgery, Chemotherapy, Crohn's Disease, Diarrhea, Inflammatory bowel disease (IBD), Invisible illness, Radiotherapy, Stomach cramp, Surgery, Ulcerative colitis

I personally don't see myself as 'disabled' but I do have an invisible illness. I can see it and I don't necessarily care if others don't. I'm fit, can walk for miles, I even look quite healthy. However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes. Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do!…

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…

29 Aug 2024

By Ronny Allan

20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Antidepressant, Anxiety, Blood brain barrier (BBB), Bradykinin, Brain serotonin, Cancer anger, Carcinoid heart disease, Carcinoid rage, Carcinoid syndrome, Depression, Desmoplasia, Diarrhea, Dopamine, Endocrine, Flushing, Foregut, Hindgut, Histamine, Hormones, Monoamine oxidase inhibitors (MAOIs), NET syndromes, Neuroendocrine, Neurotransmitter, Norepinephrine, Nutrition, Oxitriptan, Prostaglandin, Selective Serotonin Reuptake Inhibitor (SSRI), Serotonin, Serotonin and norepinephrine reuptake inhibitor (SNRI), Serotonin syndrome, Serum serotonin, St. John's wort, Thorson-Bioerck syndrome, TPH1, TPH2, Tricyclic antidepressant, Tryptophan, Tryptophan hydroxylase (TPH)

Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't…

27 Aug 2024

By Ronny Allan

5 Comments

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Alcohol, Alcohol flushing reaction, Carbocaine, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Diet, Epinephrine, Ethanol, Flushing, Hypertension, Intraoperative hypertensive crisis, Lanreotide, Liver metastases, Malabsorption, Marcaine, NET syndromes, Novocaine, Octreotide, Paraganglioma, Pheochromocytoma, Probiotic, Surgery, Syndrome, The 5 E's

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

17 Aug 2024

By Ronny Allan

9 Comments

Don’t worry, I really am OK!

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipSurvivorship

I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer" and a similar article from Fred Hutch in USA "Why people keep quiet about their battle with cancer" is also interesting reading. The usual range of reactions and fears can be found in these stories and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly, as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'. For the uninitiated, I'm…

14 Aug 2024

By Ronny Allan

9 Comments

2024 Update from Ronny Allan: Reassuringly stable!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Surveillance

In every surveillance session I’ve had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable! In 2023, I was given the headline of "No evidence…

13 Aug 2024

By Ronny Allan

10 Comments

I can see my invisible illness

Awareness, Inspiration, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Invisible illness

As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I've travelled and what I have been able to do. It's more than I thought I'd be able to do, I didn't expect to still be here. Often, I feel lucky. Perhaps an odd thing to say when I'm living with Stage IV cancer. But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played. As long as it's not a flush! No pity…

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 wasn't supposed 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,…

24 Jul 2024

By Ronny Allan

3 Comments

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, The NET Effect SeriesAdrenocorticotropic Hormone (ACTH), Afinitor, Blood glucose, Cortisol, Cushing's syndrome, Diabetes, Distal pancreatectomy, Everolimus, Exocrine function (pancreas), Glucagon, Glucagonoma, Glycated Hemoglobin (A1C), HbA1c, Hyperglycemia, Hypoglycemia, Insulin, Insulinoma, Lanreotide, NET syndromes, Octreotide, Pancreas, Pancreatic enzyme replacement therapy (PERT), Pancreatogenic diabetes, Pancreoprivic diabetes, Prediabetes, Somatostatin analogues, Somatostatinoma, Sunitinib (Sutent), Total pancreatectomy, Type 1 diabetes, Type 2 diabetes, Type 3c diabetes, Type 3c diabetes mellitus (T3cDM), Whipple procedure

Updated January 2026Originally published September 2018. My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes with a score…

23 Jul 2024

By Ronny Allan

6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Invisible illness

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call…

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 UKAs 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 the route for…

Category: Living with Neuroendocrine Cancer