NET syndromes - Ronny Allan - Living with Neuroendocrine Cancer

03Jan 2023 by Ronny Allan 2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials, 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…

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…

09Nov 2022 by Ronny Allan 6 Comments

Piss off Cancer, it’s been 12 years since my “big surgery”

Awareness, Inspiration

I'm still hereI was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much grander announcement…

07Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: Beware But Be Aware

Awareness

An awareness post from Ronny Allan BEWARE There are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones,…

08Apr 2022 by Ronny Allan 1 Comment

My illness may be invisible, but I am not – Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Survivorship

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years before making a vague announcementI had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought. Sorry too late, I'm metastatic,…

16Mar 2022 by Ronny Allan 4 Comments

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…

11Sep 2021 by Ronny Allan No Comments

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…

08Aug 2021 by Ronny Allan 1 Comment

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

In my patient support group of 8000+, 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…

04Aug 2021 by Ronny Allan 8 Comments

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. …

13Jul 2021 by Ronny Allan No Comments

Every picture tells a story (point, click, read)

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

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

17Jun 2021 by Ronny Allan 1 Comment

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship

An opinion postWhen I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings (‘Emotions’) at work would make me flush though! As for ‘Eating’ – well that’s another couple of blog’s worth! Worth…

22Oct 2020 by Ronny Allan 2 Comments

Early diagnosis of late stage cancer!

Awareness

OPINION: What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon once said something similar. Clearly doctors are 'guesstimating' so these comments must be considered anecdotal rather than scientific fact - there's simply no surveillance records to prove it in individual…

06Feb 2020 by Ronny Allan 9 Comments

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment, and my follow up and support from a specialist centre were in place. I cope, but I wouldn’t say…

09Nov 2019 by Ronny Allan 3 Comments

“Please find something wrong with me”

Awareness, Patient Advocacy

I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again…

31Oct 2019 by Ronny Allan 9 Comments

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness

DoubleNeuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed. Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond.Double ToilIf it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis. At the same time, the tumours can still be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma - also delaying diagnosis. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic,…

04Sep 2019 by Ronny Allan 2 Comments

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer

Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here.I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much many days out). [caption id="attachment_14267" align="aligncenter" width="960"] Motivation is often difficult[/caption]ExerciseEverywhere you look, there are experts telling us that exercise is good…

11Mar 2019 by Ronny Allan 4 Comments

Neuroendocrine Cancer: No one gets it until they get it!

Awareness, Living with Neuroendocrine Cancer, 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 description. …

21Nov 2018 by Ronny Allan 10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I have a lot to be thankful for[caption id="attachment_24013" align="aligncenter" width="1024"] Click on the picture to read[/caption] The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcementSorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY![caption id="attachment_14152" align="aligncenter" width="640"] Click on the picture to read[/caption]No thanks for making a right mess inside my body!I mean, I look really good, I look really well, but you should see my INSIDES[caption id="attachment_3720" align="aligncenter" width="391"] Click on the picture to read[/caption]No thanks for generating fibrosis throughout my mesentery and retroperitoneum!I really didn’t know what to make of this issue at diagnosis, although…

16Sep 2018 by Ronny Allan 3 Comments

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamoring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes One of my followers entitled a post in my group with "The hits keep coming" in reference to encountering yet another problem in the journey with Neuroendocrine Cancer. I now know how she feels, this issue is a bit…

07Sep 2018 by Ronny Allan 3 Comments

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy

Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if left too long it can be life threatening - Click here to find out why. The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate.…

12Feb 2018 by Ronny Allan 9 Comments

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid blood levels are now normal for the first time in 4 years (since there are records of test results - it might be longer).[caption id="attachment_16877" align="aligncenter" width="640"] Click on the…

11Jan 2018 by Ronny Allan 29 Comments

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

After 7 years of avoiding pancreatic enzyme replacement therapy (PERT) since diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm not losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus the trial. You know me, I like to research and analyse such things! I've actually written about a lot of these issues in my Nutrition series ..... so this is now 'Article…

30Dec 2017 by Ronny Allan 2 Comments

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year. My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015. A chunk of these figures can be attributed to most of these articles. Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906 Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis…

20Dec 2017 by Ronny Allan 5 Comments

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving to four. After that, I moved to…

30Oct 2017 by Ronny Allan 35 Comments

Neuroendocrine Cancer – normally slow but always sneaky

Awareness

An awareness post from Ronny Allan There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. It is the great pretender.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems. It wants…

16Oct 2017 by Ronny Allan 2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

OPINION:"Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But the latest statistics (and even these can be said to be quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for…

08Oct 2017 by Ronny Allan 7 Comments

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

Patient stories are key to any awareness campaign. Nothing like a human being standing up and letting you know about their experience. Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that's fine. Many are from…

16Jun 2017 by Ronny Allan No Comments

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Ronny Allan's 'PoNETry' © series can be shared with poetry credit to:RonnyAllan.NETThanks for readingRonnyI also have one about Lanreotide (or "butt darts" in general) - click here Click here and answer all questions to join my private Facebook group Subscribe to my newsletter Email address First name (Optional) Last name (Optional) By subscribing, you agree with Revue’s Terms of Service and Privacy Policy. Thanks for reading.RonnyI’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’Sign up for my newsletters - Click HereDisclaimerMy Diagnosis and Treatment HistoryFollow me on twitterCheck out my online presentationsCheck out my WEGO Health AwardsLike my new awareness page - click here or on the photo. (Like rather than follow please!)Check out my…

25Apr 2017 by Ronny Allan 15 Comments

Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then.As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then, it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever needed doing.…

28Dec 2016 by Ronny Allan 28 Comments

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Treatment

Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the hypothalamus and some other tissues such as the pancreas and the gastrointestinal tract. However, it can only handle the normal release of hormones. When NET syndromes occur, the naturally occurring somatostatin is unable to cope. The…

05Dec 2016 by Ronny Allan 6 Comments

Neuroendocrine – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

Update 15th November 2021. A study presented at NANETS 2021 produced data to suggest the causes and treatment for carcinoid crisis have been wrong and that a new model is required. Read the article here or by clicking on the picture.Author's note: This is probably a controversial conclusion in some circles and it's worth pointing out that so-called 'carcinoid crisis' isn't going away, just the need for time-consuming and expensive, and apparently ineffective according to the study, perioperative protection. And the study also noted that medication to treat complications was still required. I don't believe we should immediately dismiss this conclusion as one of the authors is a 'big hitter' NET Specialist surgeon (Dr Rodney Pommier) whose job is to keep patients safe on the operating table. The original article…

30Nov 2016 by Ronny Allan 7 Comments

NET Syndromes – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' and not one of associated 'Neuroendocrine Tumours'. So which comes first? I guess it's the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios. Alternatively, a tumour…

18Nov 2016 by Ronny Allan 11 Comments

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared as a death sentence is now an illness in which many people survive. As survival rates increase, so too will the number of people who live with the legacy of…

08Sep 2016 by Ronny Allan 20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy

picture shows an actual serotonin receptor BackgroundI'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Cancer patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't really 100% tied down - the human body is extremely complex.You may see serotonin referred to as a 'neurotransmitter', a 'chemical' and a 'hormone' - this…

15Jun 2016 by Ronny Allan 4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine Cancer

In a previous life, I used the term 'smoke and mirrors' quite a bit. I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail. Sometimes there was an element of 'covertness' or a 'hidden agenda'. It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late. Some of you will already be seeing where I'm going with this line of thinking - if so, you worked out my hidden agenda! 'Smoke and Mirrors' is basically a term connected to the art of deception, a con trick, a way in through confusion and…

25May 2016 by Ronny Allan 5 Comments

The 5 E’s (of Carcinoid Syndrome)

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

Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid syndrome" in this article, I only mean the syndrome that is caused by what was once called "Carcinoid Tumors", i.e. mainly serotonin secreting types but include tumours which are well differentiated found in the small intestine, appendiceal, rectal, lung, and one or two other less common places. There are many variations of this list, but this is my take! I suspect some of this also applies to…

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Awareness, Patient Advocacy

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

22Apr 2015 by Ronny Allan 41 Comments

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy

OPINIONThere's a constant debate regarding the validity of the term 'Carcinoid'. I've posted about this a few times and as far as I know, the debate has been raging for some years.EDIT MARCH 2022. The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word "carcinoid" is now a choice - the WHO Lung Committee bottled it. I made my choice some years ago, I hope others follow suit. Read more about changes to Lung NEN by clicking here. EDIT APRIL 2020. The latest classification system for Neuroendocrine Neoplasms confirms the word "carcinoid" no longer forms part of the terminology used in Digestive System tumours (effectively removing the term from GEP NETs) - read more - click hereEdit May 2020. So, what about other areas not included in GEPNETs above? Please note there…

16Oct 2014 by Ronny Allan 14 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy

Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are. Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout) is useful to aid a diagnosis, albeit…