RonnyAllan.NET – Summary of November 2022

RonnyAllan.NET – Summary of November 2022

Awareness, Newsletters, Patient Advocacy
In November 2022, I was very active on my blog site as it was World Neuroendocrine Cancer Day on 10th Nov (although every day is the same for me!).   The death of Wilko Johnson was unexpected, I tough he would be strumming his guitar for a bit longer.  That was the top post by some margin.   The 2nd top was surprisingly popular - empathy from an oncology nurse diagnosed with cancer.  Only one old favourite made it into the top 5. Here are the 5 most read posts in November 2022.  Click on the blue heading or the picture to read. My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko! - Ronny Allan - Living with Neuroendocrine Cancer Dear every cancer patient I ever took care of, I’m…
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In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

Clinical Trials, Patient Advocacy
This should be of interest, particularly to Canadians. (Not to be confused with 18F-FDG which is a different scan). For people waiting for imaging tests to diagnose neuroendocrine cancer, time is of the essence. Now, thanks to researchers at the University of Alberta, a new medical imaging agent for PET scans promises to reduce wait times, while costing less to produce and possibly revealing more of some types of cancer tumors. Ralf Schirrmacher, an oncology imaging professor and member of the Cancer Research Institute of Northern Alberta, and his team at the Medical Isotope and Cyclotron Facility on the U of A's South Campus have been using a state-of-the-art cyclotron—a machine that already supplies the province with medical isotopes used in diagnostic scans—to create a new imaging compound that will…
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Incurable isn’t terminal

Incurable isn’t terminal

Patient Advocacy
OpinionWords are important I was diagnosed with stage IV cancer in 2010.  OK, it wasn't a really aggressive type but it had caused a lot of damage.  It's amazing to think that someone is still adding to their stage IV cancer story after 12 years.  You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here.  So, am I terminal?  No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 12 years cannot be considered terminal. Let's look at some definitions which are generally agreed with similar wording wherever you look: Terminal Cancer Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer.…
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Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy
Definitions - the differences between Hereditary vs Familial vs Genetic DisordersI wanted to start with these definitions because people may unintentionally use these three terms interchangeably which is sometimes not the correct use of the information being conveyed. However, after studying this subject, I can tell you it is a very complex area and difficult to explain and then understand in a single paragraph.  Even these widely accepted definitions don't make it any more understandable!  The terms ‘hereditary’ and ‘familial’ look like synonyms and are frequently used interchangeably but are two different concepts. ‘Hereditary’ is most commonly used when referring to diseases with a known genetic cause whereas ’Familial’ disorders are those which appear to have a genetic component, affecting more family members than would be expected by chance alone. However,…
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Neuroendocrine Cancer:  Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy
Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex…
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Ask More, Assume Less

Ask More, Assume Less

Awareness, Patient Advocacy
This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare.  OK, that has been the case for some years but the recent data from NHS England cements this patently obvious truth. In England, it is now the 10th most prevalent cancer with a continually rising incidence – that has already seen 371% increase since 1995.  Neuroendocrine Cancer UK is possibly the most progressive organisation within the INCA national collective, although I am seeing glimmers of change in some others.  Unfortunately, many North American organizations/advocates appear to be going backward on this issue which I find bizarre. Certain European countries are also lagging. The phrase "Ask More and "Assume Less" is a great punchline and fits many of the…
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Neuroendocrine Cancer:  10 questions your dietitian will ask

Neuroendocrine Cancer: 10 questions your dietitian will ask

Diet and Nutrition, Patient Advocacy
Background to Diet and Nutrition  This is clearly an important topic for many patients.  In my group, it is the 12th most common topic out of 100 topics available. For some, it is their most pressing concern.  However, Neuroendocrine Neoplasms (NENs) are a heterogeneous group of cancers and so are people's diet and nutrition issues and needs. Some people may not have any issues and for others, there is a dependency on knowing information about the patient's type of NEN along with other information including comorbidities which might also be playing a part in driving the need. Access to Dietitians I'm certain this is an unmet need across the world, even in rich and well-developed countries.  Without any disrespect for accredited dietitians, specialist knowledge of NENs is really important given…
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Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Incidental Findings in SSTR PETSomatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive.  However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error.  Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed for an unrelated reason.”  An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…
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RonnyAllan.NET – Summary of October 2022

RonnyAllan.NET – Summary of October 2022

Awareness, Newsletters, Patient Advocacy
In October 2022, it was nice to see some of the newer blog posts featuring rather than the old favourites.  That guy Steve Jobs is there but only because I posted about the anniversary of his death on October 5th.Here are the 5 most read posts in October 2022.Evidence of disease but stableEvidence of disease but stable. People get fixated on these terms, or not even be aware of what they actually mean.... but the aim of this blog post was to say that even with Evidence of Disease (ED) you can still be stable.Click here or on the picture to read more:[caption id="attachment_36751" align="aligncenter" width="640"] Click on the picture to read more[/caption]Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER hadSteve Jobs – the most famous Neuroendocrine…
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How are you, Doctor?

How are you, Doctor?

Awareness, Patient Advocacy
When I was a kid growing up in the 50s/60s, I have vague recollections of seeing doctors from time to time. It always felt like the doctor was a highly respected person who knew everything and was someone to whom it was safe to divulge your most intimate secrets! I think for me, that perception continued throughout my time in the military and beyond.  I suspect as you mature in age, you become more relaxed about seeing a doctor and you begin to realise they are human beings just like you.  That said, the relationship is normally always a professional one, even today.  Throughout your life, many people greet you in the street or on the phone often with the words "How are you?".  You will probably say "fine" or "good…
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Benign liver lesions and cysts – something or nothing?

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy
BackgroundI wanted to focus on two terms "lesion" and "cyst" given these are mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told (or read before an appointment) this was found during diagnostic scans.  Sometimes these are described by doctors as "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (not cancer) or malignant (cancer)".  The majority of liver lesions are noncancerous (benign) and will not be related to Neuroendocrine Cancer. Many lesions are detected during imaging tests for unrelated health conditions. Although most lesions aren’t harmful, it’s still critical to receive a proper diagnosis.  This is particularly important if these lesions are in addition to known cancerous ones included with…
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Understanding your Somatostatin Receptor (SSTR) PET Results

Understanding your Somatostatin Receptor (SSTR) PET Results

Patient Advocacy
BackgroundIn my online patient group, there is constant discussion about the meaning of both pictures and words on scan reports.  The one that seems to cause the most confusion is PET scans, mainly somatostatin receptor (SSTR) PETs such as Ga68 and Cu64 variants. Worth adding that it's the addition of a nuclear tracer that makes PETs seem different. Generally speaking, the PET hardware is essentially the same.  Most have a built-in CT scan, much less frequently an MRI scan.Confusion is often triggered by healthcare system processes where the patient receives the report before the appointment to discuss the results with the referring physician.  Cue anxiety because the average patient reader does not understand and certain words cause them to worry, often unnecessary worry.  The patient then becomes impatient and will…
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Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Patient Advocacy, Treatment
Introduction I found these 10 short video series from OncLive very useful. Each video ranges from 2 - 5 minutes long and is very easy to watch and digest. Not only a succinct primer on (so-called) carcinoid syndrome but also an update on the evolving approaches. And the series also includes information on Hedinger Syndrome (carcinoid heart disease) which can be caused by the effects of this syndrome. The panel includes some 'big hitter' names in our scientific community including: Satya (Nanu) Das, MD, MSCI (Oncologist) Jerome Zacks, MD (Cardiologist) Rodney Pommier, MD (Surgeon) Video list (click on the blue link to watch each one) Episode 1 - Overview of Neuroendocrine Tumors (NETs) (onclive.com) Episode 2 - Overview of Carcinoid Syndrome (CS) (onclive.com) Episode 3 - Overview of Carcinoid Heart…
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The Hidden Pheochromocytoma

The Hidden Pheochromocytoma

Awareness, Patient Advocacy
I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET).  I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all.  If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone.The other interesting data I found is that many are not discovered until autopsy.  Perhaps some people were asymptomatic or maybe they just stoically put up with their symptoms. Perhaps their symptoms were put down to routine illness such as hypertension, maybe imaging…
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New test of pancreatic cysts to help with cancer detection

New test of pancreatic cysts to help with cancer detection

Clinical Trials, Patient Advocacy, Treatment
With NETs, particularly pancreatic NETs, due to a lack of efficient prognostic markers, it is difficult to identify which cases are more likely to metastasise than others. Identifying whether cysts will turn cancerous is also another area requiring a screening program as a standard of care to monitor.   Molecular testing is advancing and this test I'm reporting here looks like good news in the case of assessing the risks of pancreatic cysts.  Pancreatic cysts are common. For example, up to 15% of the U.S. population will develop a pancreatic cyst at some point in their lives. Most of these cysts are benign, but a small fraction will transform into cancer, including pancreatic NET. A molecular test developed by the University of Pittsburgh is able to distinguish benign pancreatic cysts from…
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Evidence of disease but stable

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Musings from a metastatic NET patient of 12 years plus 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! Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry.  Why can't doctors just…
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Neuroendocrine Cancer:  Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
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 and general cancer sites. How to use this list:1. If your term begins with an A, click on A to find all terms beginning with A.  Select your term from the list.2. For numerical terms, please click on the hashtag (#) symbol in the A to Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary, and ensuring all definitions…
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Living with cancer: 5 tips for facing things you can’t control

Living with cancer: 5 tips for facing things you can’t control

Inspiration, Patient Advocacy, Survivorship
I'm wired not to worry too much about something I cannot control.  For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through.  For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them.  I once wrote an article called "Scanxiety, I just don't get it".  In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for my own way of handling these test and surveillance events might help others.  So based on my own experience, here are my 5 tips to face things you cannot control.  5…
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Neuroendocrine Cancer:  When you get years added to your life, it’s important to get life added to your years

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

Inspiration, Patient Advocacy
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 the world because I'm known for helping.  I admit that some people are beyond my type of help, but I always suggest they should speak to specialists in the area…
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Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Patient Advocacy, Survivorship
An opinion postCureI once wrote an article called "Neuroendocrine Cancer - can it be cured".  In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be.  At the other end of the scale, I covered guidelines where doctors talk about removing tumours with "curative intent", clearly in reference to small localized tumour scenarios. I'm pretty sure in my own mind that this does happen.  As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing "no follow up" related to size and…
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Lung nodules – something or nothing?

Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy
BackgroundA focus on the issue of Lung nodules given I see these mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told this was found during diagnostic scans.  Sometimes a lung nodule is also called a ‘pulmonary’ nodule and the two phrases mean the same thing.A lung nodule is an abnormal growth that forms in a lung. You may have one nodule on the lung or several nodules. Nodules may develop in one lung or both. Most lung nodules are benign (not cancerous). Only rarely, lung nodules are a sign of cancer in the lung.  They can show up on imaging scans like X-rays or CT scans and are only found when doctors are checking for something…
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Eat that doughnut!

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
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 was inferring that we shouldn't unnecessary restrict our lives when something is low risk, particularly when something we are told is a 'no no' has been said out of context and…
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Thyroid nodules – something or nothing?

Thyroid nodules – something or nothing?

Patient Advocacy
I came across this excellent summary of Thyroid nodules from the American Association of Endocrine Surgeons which links to a similar European one.  It confirms much of what I wrote in my blog post "Troublesome Thyroids" in regard to my own thyroid issues.  I'm thankful to the AAES for promoting this on social media. I wanted to focus on the issue of Thyroid nodules given I see these mentioned all the time in my online patient group.  Clearly, when you already have a cancer diagnosis, the discovery of more issues on top of that is of concern to patients. Many are incidental and only found because of imaging following the cancer diagnosis.  This is an important point because an average of more than 50% of people over the age of 60 have…
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Neuroendocrine Cancer: At least 50 shades of grey

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, Patient Advocacy
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. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. Even within the community, so many people make blanket statements about Neuroendocrine Cancer which are misleading, e.g."they're all…
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Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials, Inspiration, Patient Advocacy, Survivorship
Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell.  Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial.  Although the story I am attaching says "Neuroendocrine Tumors" throughout, with that prognosis and the treatment he received (chemotherapy and immunotherapy), I'm reasonably confident he had a Neuroendocrine Carcinoma (Colon primary) or a Grade 3 Well Differentiated NET.  Nonetheless, his story is relevant to many people's experiences across the broad spectrum of Neuroendocrine Neoplasms (NENs). And if I am right in my assumption, even with a poorly differentiated type, there is the hope of a better prognosis. Wishing Curtis the very best.  Read his story below.(Please see my disclaimers…
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The trouble with the NET is that it can spread ……. false hope

The trouble with the NET is that it can spread ……. false hope

Patient Advocacy
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 and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area.  I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing in my patient group and on my public pages.  Annoyingly, some of it comes from unsuspecting patients who are simply sharing it from another place.  People need to think carefully before sharing this sort of thing.  It's…
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12 years – I’m still here!

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship
I finally made 12 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and settled in my liver and beyond including, strangely, in my left armpit.  It was incurable.  And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction…
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Neuroendocrine Cancer: turn surveillance into a positive

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
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 worrying situation in my opinion.  Surveillance is meant in the widest context, it can range from a telephone appointing asking questions and getting answers, all the way through to scanning. Don't…
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CT scan findings in the COVID era:  Ground Glass Opacities (GGO)

CT scan findings in the COVID era: Ground Glass Opacities (GGO)

Patient Advocacy
The COVID-19 pandemic filled our vocabularies with more medical terms than most of us would ever hear about, but some were familiar.  It soon became clear that CT scans were a useful tool to check for COVID-19.  One 2022 study showed that COVID-19 shares some features with other viral types of pneumonia, despite some differences. They commonly present as "ground glass opacities" (GGO) along with vascular thickening, air bronchogram and consolidations. Also, they differ by age, disease severity, and outcomes among COVID-19 patients.  GGOs refer to findings CT scans of COVID-19 patients that can help diagnose and monitor the infection. A similar study published early on in the pandemic came up with similar conclusions in regard the presentation on CTs of the chest.  Another study said that while it's important…
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New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

Patient Advocacy
After a few months of introducing C-19 vaccines, many cases of false-positive lymph nodes were reported on nuclear PET scans, some of which led to unnecessary biopsies and unnecessary worry for the patients concerned.According to Mayo Clinic, the positive nodes were on the same side as the vaccine shot in the cases where the injection site was known.  Mayo added that some cases had uptake in the deltoid muscle, which is normally where vaccine injections are given, leading to increased suspicion of false positive in cases where uptake was in both deltoid muscle and axillary lymph nodes (armpit).  At least one case was found in the supraclavicular nodes (clavicle area), but it was noted that might have been a stronger immune reaction due to the patient undergoing immunotherapy.This issue had…
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Living with Cancer: Don’t cross the bridge until you come to it

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

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results.  I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get.  Has it grown, has it shrunk?  What if .......  Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling.  How can you conquer this fear or is it just something you have to live with? Personally, I look at things more clinically than the average person, perhaps that's just the way my brain is wired.  For example, I try not to be concerned about results over which I have little control once the…
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Low and High Residue Foods

Low and High Residue Foods

Diet and Nutrition, Patient Advocacy
It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems.  If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option.  I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes called a low fibre diet.  For others, it might be something they encounter during procedures such as a Colonoscopy or before and after bowel surgery. It could also have some…
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On the Cancer Journey, don’t forget to live your life

On the Cancer Journey, don’t forget to live your life

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is.  In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets.  With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey. Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions.  Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors and you are sure the destination has been reached.  In a few cases, journeys may be extended or new ones started.  For late stage incurable NETs, thinking your journey is going to be a short…
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Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials, Patient Advocacy, Treatment
Breaking News It doesn't seem that long since we got the new improved injection delivery system for the current model of Lanreotide.  I had to look at my blog articles for the announcement of that and was surprised it had already been 3 years.  It may be a shorter time period for many though, UK was near the front of that rollout.  I personally found the new injection a better experience and I know the nurses were happier too.  However, I also know there was some disappointment that the injection gauge and length were the same and therefore there was little change for many in terms of the 'experience'.  Speaking from a personal perspective, there was not sufficient change for me to consider moving to self-inject. I know (at least…
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The trouble with the NET (Part 5) – Cancer Diet Myths

The trouble with the NET (Part 5) – Cancer Diet Myths

Diet and Nutrition, Patient Advocacy
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.  Even food and nutritional supplements fall into this area. Common dietary mythsThere are numerous (alleged) ‘anti-cancer’ diets and foods in the media and on the internet but some of the most common ones are highlighted in the section below. This summary cannot cover all dietary myths that you may encounter but it could be helpful to try empowering fellow patients to question the credibility of the diet claims they are coming across. The tips below…
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External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, Treatment
Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be).  Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to assist doctors and patients in their decision-making. According to the lead author, the CS is the initial prognostic score to help NET patients anticipate expected benefit from PRRT and is…
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Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials, Patient Advocacy, Treatment
Whenever I post about a new trial or study, some people get excited without understanding that these new treatments and capabilities can very often take years to come to fruition and it's also possible that clinical trials can be halted, or that national approval agencies will not approve the final product.  Please bear that in mind when reading studies/clinical trials posted on RonnyAllan.NET What is the aim of this clinical trial? The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT).  Patients entered into the study will receive ASTX727 orally up to 3 to 8 days…
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Blog review and top 10 for 2021:  RonnyAllan.NET

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
I should be happy with over a quarter of a million views in 2021 but I'm not!  Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project.  I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer outlets for my blog posts.  Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…
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Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment
With Neuroendocrine Cancer patients, the mention of "diarrhea" is a topical subject.  There's the usual claim that it's caused by carcinoid syndrome and for some that will be true, particularly people who have tumours associated with that syndrome, that is, those who have mostly a midgut primary; and that is, those who mostly have elevated levels of serotonin (via 5HIAA testing).  When you look at epidemiology data, it becomes clear the numbers associated with carcinoid syndrome are much lower than what might be perceived when analysing many comments in any patient group - most epidemiological data suggests around 10% of the total number of NET cases. There are a number of reasons for this confusion including the belief that any type of Neuroendocrine Cancer can get carcinoid syndrome when in fact…
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Small Intestine Neuroendocrine Tumours:  “No other cancer really looks like this”

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Patient Advocacy, Treatment
It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology.  As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours.  Most people might be thinking of Multiple Endocrine Neoplasia at this point (a syndrome that predisposes the patient to multiple primary tumours in different organs).  However, I also mean multi-focal…
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20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up.  To be honest, the first few days I was suffering a lot of fatigue and brain fog from the morphine/painkillers. The thought of posting stuff on Facebook was far from my thoughts.  I was receiving…
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In the land of small tumours, there is still a lot of work to do!

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials, Patient Advocacy, Treatment
I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1).  He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors".  He quotes from a 1987 article written by Dr Charles Moertel entitled "An Odyssey in the Land of Small Tumors" and I suspect he selected this article from Dr Moertel as he too writes…
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The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global pandemic and all that follows and it's throwing fuel on those fires. The COVID-19 pandemic has added another layer of complexity to the fears of NET patients. Inability to travel,…
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Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
Opinion PostI've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer".  The answer is almost impossible.  Here are a few of the reasons why these things get muddled:1. Not everyone has access to a NET specialist, let alone a Dietitian who specialises in NET. So, they come to patient groups to ask about a very 'heterogeneous' group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options. 2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with…
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Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials, Patient Advocacy, Survivorship, Treatment
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes!  Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.Neuroendocrine Tumor Pathogenesis…
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UK Travel Insurance – please give cancer patients a break!

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Updated and reviewed 10th June 2022OPINION.FOR UK NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients.  One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned.  This is based entirely on my own experience and decisions.  I also declare no interest in any of the companies listed, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company.  I do this to try to help others.   I first started supporting this issue via Macmillan in 2017 but they have…
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I thought I was going to die.  I didn’t

I thought I was going to die. I didn’t

Inspiration, Patient Advocacy, Survivorship
I thought I was going to die, I didn't Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger person. It's known that the lower grades of Neuroendocrine Tumours (NETs) have fairly good outlooks but there are still many factors…
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Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In my patient support group of 7000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers.  I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day.  In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for quite a while leading up to the diagnosis.  That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…
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Let’s Talk About NETs (#LetsTalkAboutNETs)

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Caption: Talking to Ipsen 2016 I do a lot of writing about NETs but I guess I've also done some talking too.  Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings.  Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides.  Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal.  I will keep adding them so they're all in one place.  Published talks Ann Edgar Trust - 31st August 2022 I was invited by Gordon Mackay who runs patient meetings for the Scottish NET organisation known as the Ann Edgar Trust.  As usual, I was only too happy to help. …
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11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship
I finally made 11 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility.  I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit.  It was incurable.  And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction in the general area of the mesentery and in the…
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