Patient Advocacy - Ronny Allan - Living with Neuroendocrine Cancer

14Jan 2023 by Ronny Allan No Comments

Cancer Ablation

Clinical Trials and Research, Patient Advocacy, Treatment

What is Cancer Ablation? This is a minimally invasive surgical method to treat solid cancers. Special probes are used to “burn” or “freeze” cancers. Computed Tomography (CT), Ultrasound (US) or Magnetic Resonance Imaging (MRI) is used to guide and position the needle probe into the tumour. This requires only a tiny hole, usually less than 3 mm via which the probe is introduced. When the probe is within the cancer it is attached to a generator which “burns” or “freezes” the cancer. “Burning” refers to increasing the temperature of the tumour to such a level that cancer cells die. This is usually achieved by radio frequency probes, referring to the type of energy used to increase the temperature. “Freezing” refers to cryoablation which decreases the temperature to -40 C (-40…

11Jan 2023 by Ronny Allan 3 Comments

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background When I cast my mind back to my very first surgery, I remember asking my Oncologist what I could do to put on weight. He said to drink full-fat milk. I was compliant in those days without reverting to Dr Google. Anyway, I did put on weight but perhaps the milk played a small part in that, and I eventually returned to semi-skimmed which I continue to use today (12 years on). My breakfast regime in the last 12 years since that surgery contains regular semi-skimmed milk and my many cups of tea have the same milk added. I guess there is milk in many other things such as dairy products which I happily consume. I don't believe I have any lactose intolerance to worry about. Given the…

08Jan 2023 by Ronny Allan 2 Comments

EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

Clinical Trials and Research, Patient Advocacy

To burn or not to burn?I once wrote a post about Pancreatic NET "to cut or not to cut". You can read that here. Surgery for small pancreatic NETs remains controversial with most guidelines and study guidelines recommending surveillance for small primary tumours less than 2cm. There are exceptions to that, e.g. preventative surgery if the tumour is threatening important vessels and for functional cases where the surgery is palliative in nature. Contrast that against some patient perspectives where they just want it cut out (and some will 'surgeon-shop' until they find someone who will).Most pancreatic NET are lower grades (e.g. Grade 1 and 2) well differentiated, most are non-functional, many are localised. Functional tumours such as Insulinoma are mostly small and localised. A lack of sensitive and specific markers that…

03Jan 2023 by Ronny Allan 2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment

ReviewIn 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

01Jan 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of December 2022

Awareness, Newsletters, Patient Advocacy

SummaryDecember is always the quietest month of the year, no surprise why! However, the top 10 below is somewhat surprising, I guess some posts I make spike regardless of the time of year. Ever wonder what caused your Neuroendocrine Cancer?This clearly interests people because approaching 1000 people read it from one single post on Facebook. If this floats your boat - Click here or on the picture.[caption id="attachment_3019" align="aligncenter" width="530"] Click the picture to read more[/caption]Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)A frequently visited post, very helpful I'm told. It will one day be my most-read blog post. Click here or on the picture[caption id="attachment_14876" align="aligncenter" width="640"] Click the picture to read more[/caption]A Christmas 2022 message from RonnyA first-time…

31Dec 2022 by Ronny Allan 4 Comments

Happy New Year from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny

Another year of survivalI normally only do a Facebook happy new year, but I wanted to make sure I reached everyone who follows my blog and other social media outlets. All of the outlets above have kept my viewing figures high and although I only beat 2021 viewing figures by almost 10,000, it is an upward trend, so I'll take it!2022 was an amazing year in many respects. I continue to live well with Neuroendocrine Cancer, almost like a chronic disease. I'm not foolish enough to think I don't need surveillance though. That is ongoing, including regular contact when required with my primary and secondary care contacts. The biggest problem I've had this year has been succumbing to "the other big C" (after avoiding it for 28 months!) and…

23Dec 2022 by Ronny Allan 2 Comments

A Christmas 2022 message from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny

Background to 2022I've only ever sent these on Facebook but this year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter, Facebook, Newsletter or direct from a subscription to my website. All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2022 total of around 270,000 blog hits and hitting the milestone of 2 million blog hits in early November - that was a major boost. It takes 3-4 years to get a million hits based on current performance. This has been a challenging year, mainly because the pandemic had some impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal…

14Dec 2022 by Ronny Allan No Comments

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment

Background It's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging. This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3 Neuroendocrine Tumours (NETs). It is known that some glycolytic activity might be present in some well-differentiated NETs, in particular, grade 3 and the upper range of 2 Neuroendocrine…

02Dec 2022 by Ronny Allan No Comments

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…

01Dec 2022 by Ronny Allan No Comments

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

Clinical Trials and Research, 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…

27Nov 2022 by Ronny Allan 5 Comments

Metastatic Neuroendocrine Cancer: Incurable isn’t always terminal

Awareness, Patient Advocacy

Opinion Words 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 since diagnosis of "incurable cancer". 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 13 years (2023) 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…

24Nov 2022 by Ronny Allan No Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy

Cancer is a genetic disorder. It happens when genes that manage cell activity mutate and create abnormal cells that divide and multiply, eventually disrupting how your body works. Medical researchers estimate 5% to 12% of all cancers are caused by inherited genetic mutations that you can’t control. More frequently, cancer happens as an acquired genetic mutation. Acquired genetic mutations happen over the course of your life. This is a very general description of the close relationships between genetics and cancer but I wanted to focus below on hereditary syndromes and genetic disorders related to Neuroendocrine Neoplasms. Definitions - the differences between Hereditary vs Familial vs Genetic Disorders I wanted to start with these definitions because people may unintentionally use these three terms interchangeably which is sometimes not the correct use of…

18Nov 2022 by Ronny Allan 1 Comment

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…

10Nov 2022 by Ronny Allan 2 Comments

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…

09Nov 2022 by Ronny Allan No Comments

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…

05Nov 2022 by Ronny Allan No Comments

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…

03Nov 2022 by Ronny Allan No Comments

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…

24Oct 2022 by Ronny Allan 2 Comments

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…

23Oct 2022 by Ronny Allan No Comments

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…

19Oct 2022 by Ronny Allan 3 Comments

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…

17Oct 2022 by Ronny Allan No Comments

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…

14Oct 2022 by Ronny Allan No Comments

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…

11Oct 2022 by Ronny Allan No Comments

New test of pancreatic cysts to help with cancer detection

Clinical Trials and Research, 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…

10Oct 2022 by Ronny Allan No Comments

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…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Welcome to my Neuroendocrine Cancer Glossary of Terms 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 are…

28Sep 2022 by Ronny Allan 1 Comment

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…

19Sep 2022 by Ronny Allan No Comments

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…

18Sep 2022 by Ronny Allan No Comments

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

Patient Advocacy, Survivorship

An opinion post. This subject comes up a lot in patient groups. The heterogeneity of Neuroendocrine Neoplasms (a term for both well differentiated NET and poorly differentiated NEC) tends to be forgotten as people start to make blanket statements as if it applies to every single NET patient. It becomes a rather circular discussion where certain readers might even be unnecessarily misled about their outcome casually suggested by someone who knows nothing about their diagnostic and treatment history. Part of the problem is the official cancer terms built in the 1970s remain in use today, but they do not fit the vast changes that have occurred in cancer survival and treatment for incurable types. Consequently, specialists are generating new and informal terms, more individualised, when passing on updates to their…

12Sep 2022 by Ronny Allan No Comments

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…

05Sep 2022 by Ronny Allan 2 Comments

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…

04Sep 2022 by Ronny Allan No Comments

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…

23Aug 2022 by Ronny Allan 1 Comment

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. However, while I applaud national and international NET foundations for providing GP (PCP) with symptom lists, they are…

05Aug 2022 by Ronny Allan No Comments

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

Clinical Trials and Research, 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…

28Jul 2022 by Ronny Allan 1 Comment

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…

26Jul 2022 by Ronny Allan 14 Comments

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…

24Jul 2022 by Ronny Allan No Comments

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…

17Jul 2022 by Ronny Allan 3 Comments

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…

21Jun 2022 by Ronny Allan No Comments

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…

12Jun 2022 by Ronny Allan 7 Comments

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…

07Jun 2022 by Ronny Allan No Comments

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…

04Jun 2022 by Ronny Allan 5 Comments

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 one…

16Mar 2022 by Ronny Allan 4 Comments

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

Clinical Trials and Research, Patient Advocacy, Treatment

An Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide) - now that sounds exiting. 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 was way back in 2019. 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…

03Mar 2022 by Ronny Allan No Comments

A Spotlight on Lung Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic TumoursThe aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines. This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book). This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made by senior NEN doctors in 2020 to have commonality across all blue books. Neuroendocrine neoplasm update: toward universal nomenclature © 2020 Society for Endocrinology 2020, Guido Rindi and Frediano Inzani.I can tell…

01Feb 2022 by Ronny Allan 3 Comments

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…

20Jan 2022 by Ronny Allan 3 Comments

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…

09Jan 2022 by Ronny Allan No Comments

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

Clinical Trials and Research, Patient Advocacy, Treatment

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 prior to receiving Lutathera treatment. What is ASTX727?Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for adults with intermediate and high-risk myelodysplastic syndromes (MDS) including chronic myelomonocytic leukemia (CMML).This is extremely technical, but from a study conducted by scientists at Imperial College London, they acknowledged that significant number of…

03Jan 2022 by Ronny Allan No Comments

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials and Research, 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…

05Dec 2021 by Ronny Allan 5 Comments

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment

Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect. Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD)Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater for these side effects. With NETs, particularly where there has been small intestine surgery, there can be a number of reasons which are totally unrelated to carcinoid syndrome. It's not just about having a shorter bowel, it's also about some of…

23Nov 2021 by Ronny Allan 3 Comments

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…

20Nov 2021 by Ronny Allan 2 Comments

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…

Category: Patient Advocacy