From Whipple to Waikiki by Jerry Chezick. Surf’s up!
An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he had a big challenge on his hands. Read his story of recovery helped by learning to surf! First posted in my private Facebook patient support group. Gerry kindly agreed to let me post here. Honest, open and inspiring stuff"Finally I realized, I had to become the World Expert on MY Body"I've recently passed the 2-year anniversary of my Whipple.About 9 months before, I experienced a total knee replacement and figured, if I could endure that…
Diagnosed with Neuroendocrine Tumours: Hurry up and wait
When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…
Tick off that bucket list
In 2002, I was reading a Sunday newspaper and found myself drawn to an article about hiking the 2000 year old Hadrian's Wall. The walk along Hadrian’s Wall Path is an 84 mile (135 Km) National Trail stretching coast to coast across northern England, from Wallsend, Newcastle upon Tyne in the east to Bowness-on-Solway on the west coast. It generally follows the line of Hadrian’s Wall, along the way passing through some of the most beautiful parts of northern England – from rolling fields and rugged moorland to the vibrant cities of Newcastle and Carlisle. As someone interested in history,…
Four years on
Edit 2024: One of my early posts was entitled "Four years on". I guess I was starting to recognise 'cancerversaries', perhaps realising I might get throuh the ordeal, or at least for longer than I thought. 2014 was also the year I retired after working since the age of 16! My first task was to walk the 84 miles of Hadrian's Wall. Then at year 5 (2015), I started the "I'm still here" series of posts and took it from there. Original Text from 26th July 2014. On Saturday, I glanced at the calendar on my phone and recognised the date as…
The Human Anatomy of Neuroendocrine Cancer
OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or…
Neuroendocrine Cancer – Horrible Hormones
Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you…
The trouble with the NET (Part 1) – Cancer Myths
Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media…
So what next?
See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway. The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint! Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet. That's not…
Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!
One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default…
Things are not always how they seem – Part 2
I met quite a few interesting people during my walk along the 2000 year old Hadrian's Wall 10 years ago. On Day 3, Chris and I were accompanied by our friend Dave Taylor, we noticed a couple heading up the hill that we were progressing down. We also couldn't help noticing the male of the duo was continually stopping to talk to others on the way down, and we were no exception. Interestingly, his wife kept overtaking him at these points not saying a word. He got chatting to me and Dave and we worked out he was Irish. I…
Neuroendocrine Tumours (NET) – benign vs malignant
Reviewed and Updated 13th March 2024 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question. It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)
- Updated 11th March 2024 - This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called 'Blue Books'. Words are very important in Neuroendocrine Neoplasms (NENs). Nomenclature has important meaning and context more than most other cancers due to the heterogeneity of this group of neoplasms. Grade and Stage are two factors inextricably linked to the nomenclature and while there have been less changes in these…
Living with Cancer? Take a break if you need one
It's natural to feel low, worried or stressed when we're unwell, and someone with a long-term condition is more likely to experience mental health issues. I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have a physical health issue can make a big difference to your overall wellbeing so it's worth making the effort to improve if applicable. I learned early on that when you live with any long term illness, getting through the day can be tough. For some…
February 2024 in Review – RonnyAllan.NET
It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night (and I do note some doing both!). I am very grateful. You know who you are - take a bow! Here is a summary of what we all achieved in February 2024. Something new, something blue and some borrowed too! Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks…
Staging of Neuroendocrine Neoplasms (NENs)
Stage of cancerWhat is stage? The extent of a cancer in the body. Staging is usually based on the size of the tumour, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body.What are the stage numbers? Most types of cancers have 4 stages, numbered from 1 to 4 indicating a rising spread as the number is bigger. Some cancers have a stage 0 but I don't believe this applies to Neuroendocrine Neoplasms (NENs). Often doctors write the stage down in Roman numerals, so you may see stages written…
Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice
Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about 'advice' and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice from those who mean well but in inadvertently give you not so good advice. I even wrote a critique about patient support groups in my own area of Neuroendocrine Cancer where I suggested they could be frighteningly good but also good at frightening. However, while…
Lower grade higher stage NETs – slow motion, chronic and indolent?
ContextI write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggressive NET relative (when Small Cell Lung Cancer is not included in the math). That said, the higher grades of NET can also be quite aggressive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a…
Histamine – NET or NOT?
Histamine is mentioned a lot in both patient groups and in literature as somehow connected with NETs, particularly with so called carcinoid syndrome (CS). In fact, various putative mediators, including serotonin, catecholamines, brady- and tachykinins, kallikrein, histamine, motilin, and prostaglandins, have been suggested as potential causative factors for the symptoms and complications associated with CS. It is generally believed that most of these tumour-derived secretory products are inactivated by hepatocytes and, therefore, only cause symptoms when they either bypass or are secreted outside of the portal vein drainage system. I wanted to focus on Histamine in this article. But what is the…
January 2024 in review – RonnyAllan.NET – Living with Neuroendocrine Cancer
Welcome to 2024 once again and here is a summary of what we all achieved in January 2024. Something new, something blue and some borrowed too! Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off soon! It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other…
Things not to say to someone with cancer
This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere! Personally, I don't tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never…
Do we need a new model for Carcinoid Crisis in NETs?
Update January 2024 Dr Rodney Pommier, a NET specialist surgeon in Oregon has been writing about the issue of carcinoid crisis for some years and has finally produced data which turns previous guidelines on their head. Clearly when it comes to (so called) carcinoid crisis, surgeons are at the sharp end of experience alongside their anaesthetist colleagues. The detail from the study sits behind a paywall but the conclusion is given and cited below. You can read the abstract here or click on the 'conclusion' section below. I again emphasise as I have done in the original publication of this…
Scanxiety – I just don’t get it!
OPINION ...... but read the post before you form your own based on the post title The internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting…
Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients
There can be no doubt that the discovery of somatostatin receptors as a means to treat Neuroendocrine Tumours has been a huge success. Additionally, scientists looked at a theranostic angle and provided somatostatin receptor based imaging for diagnosis and surveillance purposes. Many patients are prescribed somatostatin anlaogues shortly after diagnosis and this has led to a reduction in the morbidity that comes from active carcinoid syndrome and has reduced the incidence of carcinoid heart disease. More recently, the introduction of somatostatin receptor based PETs, taking over from the elderly Octreotide scans, has meant speedier and higher quality identification of NETs…
European Neuroendocrine Tumor Society (ENETS) 2022 Guidance Paper for Carcinoid Syndrome and Carcinoid Heart Disease
Author's commentMy 'Spotlight' on Carcinoid Syndrome may be easier reading for some but for those who wanted to dive into NET Specialist authored guidelines, this set from ENETS will be of use.Scope. Carcinoid Syndrome (CS) and Carcinoid Heart Disease (CHD) formally known as Hedinger Syndrome) are related in that the latter is a rare and complex cardiac complication occurring in patients with advanced NETs and CS. CS is predominantly encountered in patients with well-differentiated NETs of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin (UKO) NETs. It follows…
Clinical Trial – Lutathera NETTER-2 Important Update
UPDATE - June 5th 2024. [177Lu]Lu-DOTA-TATE plus long-acting octreotide versus high‑dose long-acting octreotide for the treatment of newly diagnosed, advanced grade 2–3, well-differentiated, gastroenteropancreatic neuroendocrine tumours (NETTER-2): an open-label, randomised, phase 3 study Summary There are currently no standard first-line treatment options for patients with higher grade 2–3, well-differentiated, advanced, gastroenteropancreatic neuroendocrine tumours. We aimed to investigate the efficacy and safety of first-line [177Lu]Lu-DOTA-TATE (177Lu-Dotatate) treatment.MethodsNETTER-2 was an open-label, randomised, parallel-group, superiority, phase 3 trial. We enrolled patients (aged ≥15 years) with newly diagnosed higher grade 2 (Ki67 ≥10% and ≤20%) and grade 3 (Ki67 >20% and ≤55%), somatostatin receptor-positive…
Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (SWOG S2104)
What is SWOG S2104? A Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine TumorsPancreatic neuroendocrine tumors (pNETS) account for about 1-2% of all the pancreas tumors for which resection is the only curative intent modality, however, despite surgery, many patients will experience recurrence. Tumor size, positive lymph nodes and higher grade are prognostic factors for recurrence. The U.S. Neuroendocrine Tumor Study Group published a predictive score (Zaidi score but also see inclusion criteria) demonstrating that tumors with a score ≥6 had a 33% likelihood of recurrence by 24 months. Furthermore, it is…
FDA Accepts New Drug Application for Generic Lutetium Lu 177 Dotatate (177Lu-PNT2003) in GEP-NETs
Breaking News. We have generic somatostatin analogues, generic targeted therapy, and I guess it was only a matter of time until we got generic PRRT (Radioligand Therapy) e.g. generic Lutetium Lu 177 dotatate. This news begins that process which is also based on a clinical trial which took place in Canada (195 participants) and which now appears to be complete. The announcement comes from US but if this is realised, you can expect it to be available in many other countries and continents where there is a market. This may even drive down prices and/or increase availability. The FDA has…
Me and the other big C December 2023
When covid-19 first hit the scenes early 2020, it was a bit of a shock, a bit of a worry, but most people (including yours truly) thought it would be over in a few months. So it was a bit of a shock when I tested positive in Dec 2023 shortly after getting back from a trip to London. Strangely, Chris was not affected. After I tested positive, we effectively isolated each other and took precautions.Back in 2020. we both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote…
RonnyAllan.NET – a review of 2023
ReviewIn 2023, I managed to push beyond the 2022 totals, that was a major boost for me given December was a write off due to illnes. To be honest, I’m still flabbergasted by reaching one million views in 2018, and then reach 2 million in December 2020. I'm a third of the way to 3 million at 1 Jan 2024. It just kinda happened, there wasn't a plan! It's mindboggling. I'm grateful for every single view though.2023 was a challenging year, mainly because the pandemic continues to have some latent impact on my social media including in terms of growth. 2020…
A review of December 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
December is always quieter than other months for obovus reasions, although I do try to maintain normality. The month started well and then turned into an absolute disaster. A death in the family followed by my second Covid-19 infection and at the time of writing, although now testing negative, I am still strugging with what feels like a regular and lingering chest infection. I'm thankful to those who supported me througout December, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites,…
Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome
Update 20th November 2025 Crinetics Announces First Patient Randomized in Pivotal Phase 3 CAREFNDR Trial Evaluating Paltusotine in Carcinoid Syndrome Read the news - click here Clinical Trial Document - click here Limited to US (22 locations), Spain, France, Argentina, Brazil (so far). Update 25th September 2025 - Crinetics Crinetics Announces FDA Approval of PALSONIFY™ (paltusotine) for the Treatment of Acromegaly in Adults - September 25, 2025 Read more - click here. Learn more about PALSONIFY BY clicking here. Note: Approval of somatostatin analogues for acromegaly normally precedes approval for NET. UPDATE 14th March 2024 Results from Paltusotine Carcinoid Syndrome…
Midgut neuroendocrine tumor patients have a depleted gut microbiome with a discriminative signature
What is the gut microbiome? According to Cleveland Clinic, your gut microbiome is a microscopic world within the world of your larger body. The trillions of microorganisms that live there affect each other and their environment in various ways. They also appear to influence many aspects of your overall health, both within your digestive system and outside of it. If you read their summary here, you can understand some of the implications of this study. However, as the study concluded, midgut NET patients have an altered gut microbiome which could suggest a role in NET development and provide novel targets…
Novel Therapeutic Target for Pulmonary Neuroendocrine Tumours Uncovered
A culture of miniature neuroendocrine tumors. [Talya Dayton, copyright: Hubrecht Institute.] I'll flesh this out in due course, but this is something I'd like to track. Pulmonary NETs don't have as many treatments as Gastroenteropancreatic NETs (GEP NETs). Thanks for reading. Druggable growth dependencies and tumor evolution analysis in patient-derived organoids of neuroendocrine neoplasms from multiple body sites Talya L. Dayton Nicolas Alcala Laura Moonen Matthieu Foll Lynnette Fernández-Cuesta Hans Clevers Show all authors Show footnotes Open AccessDOI: https://doi.org/10.1016/j.ccell.2023.11.007Quick summary - click here Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of…
There are no perfect answers about an imperfect cancer
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are 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.This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis. I very much suspect this challenge is the same for many types of…
A Spotlight on NET Syndromes – Carcinoid Syndrome
What is Carcinoid Syndrome?Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs) and is defined by chronic diarrhoea and/or flushing in the presence of systemic elevated levels of serotonin or its metabolite 5-hydroxyindolacetic acid (5-HIAA). Importantly, other causes of these symptoms should be considered and investigated depending on the clinical presentation. CS is predominantly encountered in patients with well-differentiated NENs (neuroendocrine tumours, NETs) of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin NETs. The main symptoms defining CS are skin flushing, secretory diarrhoea, bronchospasm, or abdominal…
Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus
US Trial I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177 dotatate) vs the efficacy of Everolimus (Afinitor). The latter is approved for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease (US FDA wording, Europe is similar). What is this trial? This phase II trial studies the effect of lutetium Lu 177 dotatate compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive bronchial neuroendocrine tumors that have spread to other places in…
Opinion: Let’s attack Cancer metaphors
Since I started blogging, I've read dozens of articles on the subject of 'cancer metaphors' and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms. The authors say that perhaps this is not the best language to use. One author used the term 'violence' to describe these type of metaphors. A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use. I don't like Cancer - it attacked me, it attacked…
A review of November 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
November is always busier as I help spread awareness for 10th Nov (remembering that every day is 10th Nov on my site!). I also managed to push out quite a few blogs, some 'remasters' from 2014 but with their originality from that time. Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off in the snow soon! It's tough…
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma
This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based on recent developments and study results. These recommendations aim to pave the road for more standardized care for our patients resulting in improved outcomes. However, it's true to say that the prognosis for differentiated Neuroendocrine Carcinomas (NEC) is generally poorer than the less aggressive Neuroendocrine Tumours (NET).Surgery can be of benefit for localized disease after extensive preoperative imaging. Carboplatin in combination with etoposide is recommended as first-line treatment for metastatic disease. Irinotecan with fluoropyrimidines has…
Neuroendocrine Cancer – Clinical Esoterica
The good news ....... things are improving, the latest US figures confirm two major changes:1. Most diagnoses are now early stage2. The disease is no longer rare and no longer an orphan diseaseOne of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or…
Neuroendocrine Cancer – The F Words
When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the time, it was a temporary vehicle for the single purpose of raising money for charity). An idea I had probably led to the longer term survival of this blog after people quite liked the descriptions of well known words used in NET parlance. I managed this using an A to Z list over approximately 26 days which was perfect for my timeline. I gradually renamed those early blog posts and I just noticed that the…
Laughter is the best medicine
Laughter is important. This is a remastered version of one of my early blog posts. It centred on a 'get-well' card I received recuperating in hospital after my first major surgery. The person who sent it knew I had a sense of humour, and it did make me smile. My surgeon's secretary came to visit me, and I invited her to check out my cards....... she fell about on the floor laughing! That caused me to laugh (carefully!). All the nurses looking after me had a good laugh too! How many times have you heard it said that laughter is the…
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for gastric neuroendocrine tumours (NETs) G1–G3
The ENETS 2023 guideline for gNETs are combined with the guidelines for Duodenal NET (dNET) due to their close relationship in anatomical terms. Gastric neuroendocrine neoplasms (gNENs) are tumours with an increasing annual incidence and. The vast majority of gNENs are well-differentiated neuroendrocrine tumours (NETs), which are usually classified according to the background gastric pathology into three major categories known as "types" - these should not be confused with "grades" which are generated by histopathological tissue sampling (biopsy). Type I when chronic atrophic gastritis (CAG) is present resulting in hypergastrinaemia (high Gastrin) and high gastric pH. They are the most common type,…
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Duodenal neuroendocrine tumours (NETs) G1–G3
The ENETS 2023 guideline for dNETs are combined with the guidelines for Gastric NET (gNET) due to their close relationship in anatomical terms. But there are functional linkages to the pancreas, therefore also links to that as above. The duodenum is technically part of the small intestine, and you can find that in most anatomy-based descriptions. One of the research references I used was titled “Somewhere between the pancreas and the small intestine” and in the case of Duodenal NENs (dNENs), I can understand why they adopted that unconventional anatomy description. I suspect they contextually meant that they are not…
I woke up on World Neuroendocrine Cancer Day
1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …
Piss off Cancer, it’s been 13 years since my “big surgery”
D Day 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 and grading, in addition to the 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 would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention,…
When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Jennifer R. Eads, MD Associate Professor of Clinical Medicine Physician Lead, GI Clinical Research Director, National Clinical Trials Network Director, Penn Neuroendocrine Tumor Program Division of Hematology and Oncology University of Pennsylvania, Abramson Cancer Center Perelman Center for Advanced Medicine Philadelphia,…
8th November 2010 – on the way to hospital for surgery, alert the crash team!
The Journey to the Hospital on 8th November didn’t go smoothly!I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November. The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving me to the hospital for my first surgery, the "my big surgery" as I call it. It was "debulking" i.e. get as much as possible. In the end, the liver was left for another day.I had been working since being diagnosed and was still sending work emails…
Neuroendocrine Cancer: Make time for your wellness
I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during cancer:You could try to surround yourself with positive people and positive energy. Seek support from your friends, family, or a support group who can listen to you, encourage you, and even make you laugh. You can also read inspirational books, listen to uplifting music, or…