The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century
USA - Prevalence of Neuroendocrine Neoplasms (NENs) breaches the Orphan Disease threshold for the first time (officially) The latest US SEER figures confirm that staggering increase in the prevalence of NENs. In that cross-sectional study which evaluated 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated…
Reframing Neuroendocrine Neoplasms Beyond “Rare”
Reframing Neuroendocrine Neoplasms: Beyond “Rare” Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, they now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late. The Global Reality - examples Country Status 🇺🇸 United States No longer qualifies as an orphan disease — prevalence now exceeds 243,000 cases. The FDA’s own phrasing—“orphan status to drugs and biologics for rare diseases that meet certain criteria”—makes it clear…
Every stripe is lost awareness
Sincer 2015, my message has not changed. My message continues to be justified because since then, many important voices in the NEN community have repeated it! However, there has been, and still remains, some instransigence, although some of that has now buckled in the face of the recent US SEER statistics. However, the buckling needs to spread and expand. Unfortuantely, some elements of the NEN communmity remain entrenched in old thinking, in flawed thinking. I can only describe them as negative disruptors, clinging on to this old thinking. It seems like they refuse to change their mind or plan to…
Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide
Scroll down to check out the doctors list just below Scroll down to also see information on "NET Aware" Dietitians. 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! 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). Why are they important, who should…
Neuroendocrine Cancer: a needle in a haystack?
Reviewed and edited 6th December 2024 It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the US SEER database report issued in 2017 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.Neuroendocrine Cancer is a heterogenous group…
Immunotherapy and Neuroendocrine Neoplasms
Updated 24th September 2025. IntroductionThere's a lot of Immunotherapy stuff out there! The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed. I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely that any…
My NET is different than yours
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…
Ronny Allan’s Glossary of Terms (Basic Edition)
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…
The 6 E’s
An opinion postWhen 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 I…
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)
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…
Early diagnosis of late stage cancer
Early diagnosis of late stage cancer What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here. "The cancer has been growing for years" One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in…
Neuroendocrine Cancer in England: One every 90 minutes
I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now approximately 6000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of approximately 9/100,000. This means NEN can now no longer be defined…
Health Union Certified Patient Leader – Ronny Allan, Living with Neuroendocrine Cancer
Health Union launches an accreditation program for patient leaders. 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…
Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma
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 cells and…
Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)
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…
The Other 5 E’s by Ronny Allan
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 EsThose who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story…
The NETest® – a Chromogranin A replacement and more?
Update 8th Dec 2025. Hot off the press. 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 here to…
Don’t believe the hype – Neuroendocrine Cancer Myths debunked
Edited and refreshed 17th November 2024OPINION 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 metastasiseSimply untrue. They are a heterogeneous group of tumours. Read more hereMyth 2: All Neuroendocrine…
Genetics and Neuroendocrine Tumors
Hereditary genetics.....where to focusIn 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 (perhaps along…
Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one on Invisible Illness - click here Click here and answer all questions to join my private Facebook group Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’ Sign up for my newsletters - Click Here Disclaimer My Diagnosis and Treatment History Follow me on twitter Check out my online presentations Check out my WEGO Health Awards Like my new awareness…
4th February World Cancer Day 2025 – United by Unique
What is World Cancer Day? World Cancer Day is an initiative of the Union for International Cancer Control (UICC), the largest and oldest international cancer organisation dedicated to taking action on cancer. UICC unites and supports the cancer community in its efforts to reduce the global cancer burden, promote greater equity and ensure that cancer control remains a priority on the global health and development agenda. Founded in 1933 and based in Geneva, Switzerland, UICC has more than 1120 member organisations in over 172 countries and territories. The membership base includes the world’s major cancer leagues and societies, research institutes, treatment centres, hospitals, ministries…
Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs
Update - 13th November 2025. ITM Announces FDA Acceptance of New Drug Application (NDA) and PDUFA Date for n.c.a. ¹⁷⁷Lu-edotreotide (ITM-11) in Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs)Garching / Munich, Germany, November 13, 2025 - ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) completed its filing review and accepted the company’s New Drug Application (NDA) for n.c.a. 177Lu-edotreotide (also known as ITM-11 or 177Lu-edotreotide). 177Lu-edotreotide is ITM’s proprietary, synthetic, targeted radiotherapeutic investigational agent for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The FDA has set a Prescription Drug User Fee Act (PDUFA) goal date…
Neuroendocrine Cancer: Not all answers are black and white
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 today,…
Ronny’s weekly update 20-26 January 2025
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/24/neuroendocrine-cancer-ga68-pet-scan-a-game-changer/ https://ronnyallan.net/2025/01/22/neuroendocrine-cancer-to-cut-or-not-to-cut/ https://ronnyallan.net/2025/01/21/neuroendocrine-cancer-my-liver-surgery/ https://ronnyallan.net/2025/01/18/every-picture-tells-a-story/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group an oldie but…
There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient
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…
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
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…
Ronny Allan – Every picture tells a story
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),…
Neuroendocrine Cancer: Diagnosing the Undiagnosed
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…
Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide
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 overscretions 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 are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the…
Neuroendocrine Cancer – If you can see it, you can detect it!
Updated December 2025BackgroundScanning 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 might resolve this' and…
Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)
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…
Nick Robinson – Neuroendocrine Cancer – the devil is in the detail
Originally published March 2015. Updated 10th February 2025 Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day. Nick is pretty good at painting politicians into a corner, trying to eek out what they really think, not the 'spin' which they are normally pretty good at. Like a lot of people, Nick's life changed when he was diagnosed with…
Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years
Self Pity or Self Help? 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…
Neuroendocrine Cancer – tumour markers and hormone levels
Originally published 2016, updated October 2025BackgroundSome people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a…
It’s scary searching Cancer online
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…
Happy Thanksgiving
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!). …
The Invisible NET Patient Population
First published August 2017 but updated several timesUPDATED TO INCUDE PUBLISHED US FIGURES IN 2025OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand…
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life
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…
Carcinoid – What’s in a name?
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…
Things to do today
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…
Pancreatic Cancer vs Neuroendocrine Cancer of Pancreatic Origin
Reviewed and updated 24th October 2024I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press. The two main reasons I take up these campaigns are as follows:1. They are totally different cancers despite an anatomical relationship. Although they can share a similar presentation, they can have different signs, different treatments, and vastly different prognostic outcomes. Anyone looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some…
5 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)
Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrased, 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…
Neuroendocrine Tumour (NET) – don’t let it be a Crisis
Update November 2025. This new document from the same surgeon and NET team below has further justified why they now adopt a totally different approach to nearly everyone else and they can back it up with evidence. This followed the updated blog below "Do we need a new model for carcinoid crisis in NETs?". It looks like they have deployed this 'new model' given their statement "Based on our research, at Oregon Health & Science University, we have entirely stopped using octreotide during operations, relying instead on vasopressors and treatment directed at managing distributive shock". Worth a read. Intraoperative Carcinoid…
Weight – the NET Effect
ForewordAfter my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment.Fast forward 4 years, I had to buy some more suits as my weight was going back on.Fast forward 14 years and my weight is…
A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms
Reviewed and updated 26th June 2024High Grade Neuroendocrine Neoplasms - the forgotten patient group?When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short. Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming. I too am guilty of having a large Facebook site falling into this category. It's little wonder that those with high grade disease can often feel like the forgotten patient group. Clearly all…
F*** you cancer, I’m still here!
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…
Don’t be underactive with your Thyroid surveillance
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…
Palliative Care – it might just save your life
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…
Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)
Update 4th September 2024. I have been informed by a third party and trusted source that this upgrade to Lanreotide Ipsen injection device which I published in 2022, will not happen. Apparently, the project announced in 2022 never really got off the ground. My own guess is that Ipsen's business case expenditure was too much risk given the rise of the generic Lanreotide meds around the same time, i.e. the return of investment (ROI) would not be recouped.I do not understand why Ipsen did not offer a lower price to remain competitive in UK and elsewhere. It makes me think that…