Hot Saturday cycle ride
You're right, this is a strange title for Ronny to use on his blog........ However, I'm testing a different way to blog from my website to test something which has been annoying me (and others). Anyway, that's the explantion, now enjoy the pictures and story!The weather in UK is currently very hot (..... for UK!) so we decided on a slow cycle down to the nearest beach. It was a great and relaxing ride. We had already taken sandwiches for lunch and we just needed a cup of tea (cappachino for Chri) at a place called The Noisy Lobster -…
The 6 E’s
An opinion postWhen I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I…
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)
After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus…
Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)
A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…
The Other 5 E’s by Ronny Allan
I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 EsThose who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story…
Don’t believe the hype – Neuroendocrine Cancer Myths debunked
Edited and refreshed 17th November 2024OPINION There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasiseSimply untrue. They are a heterogeneous group of tumours. Read more hereMyth 2: All Neuroendocrine…
Genetics and Neuroendocrine Tumors
Hereditary genetics.....where to focusIn recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them.Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours (perhaps along…
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me). Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors. If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
Ronny Allan – Every picture tells a story
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…
Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide
Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the…
Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years
Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in…
It’s scary searching Cancer online
When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice…
Happy Thanksgiving
I have been posting this every year on last Thursday in November and I kept forgetting that other countries other than USA (and Territories of the United States) also do Thanksgiving but mostly on different dates. This includes (but is probably not limited to): Canada, Brazil, Grenada, Liberia, Saint Lucia, Leiden (Netherlands), Norfolk Island (Australia). I hope you all had/have a great Thanksgiving Day! Turkey and Sleep Now ........ I hate to stereotype but I guess a lot of you might be eating turkey on Thanksgiving Day? No Thanksgiving is complete without a turkey at the table (... so I'm told!). …
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life
Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
Things to do today
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something…
Weight – the NET Effect
ForewordAfter my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment.Fast forward 4 years, I had to buy some more suits as my weight was going back on.Fast forward 14 years and my weight is…
Don’t be underactive with your Thyroid surveillance
From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid…
Eat that doughnut!
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.e.…
Palliative Care – it might just save your life
When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues
Republished and reformatted and reviewed 1st September 2024. Original published 31st March 2016. What is Telotristat Ethyl?Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® Who is the drug for?The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately controlled by somatostatin analogues…
Neuroendocrine Cancer: I Can
Opinion. Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal! And I make no apologies for my approach. So, when I wrote my blog post "Living…
Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?
Updated 25th August 2024 to add data on scenarios of liver and peritoneal metastases, plus a review of the Influence of Lymphatic, Microvascular and Perineural Invasion on Oncological Outcome in Patients with Neuroendocrine Tumors of the Small Intestine. It also incudes links to the European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumoursSmall Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease. …
Neuroendocrine Cancer: Glossary of Terms
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 database:1. If your term begins with an A, click on A to find all terms beginning with A. Select your terms beginning with A from the filtered list.2. For numerical terms (e.g. 5HIAA etc), 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…
I’m still here
I wasn't supposed to be here but I am. I was diagnosed with metastatic Neuroendocrine Tumours (NETs) on 26th July 2010. Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do.There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end…
Sometimes you just gotta climb that hill!
It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we simultaneously said, "do we really want to go up that in this weather?" Oh yes ....... no pain, no gain! So, we went up the hill and it hurt. Up there, it was wetter, windier and much…
Alcohol – the NET Effect
Opinion. First published in January 2016. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then. When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It…
Poker Face or Cancer Card?
Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really…
Road ahead closed – Bowel Obstructions
OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…
Did you hear the one about the constipated NET patient?
In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
Please flush after use!
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others). I think if there were a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours.I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses.I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling…
Neuroendocrine Cancer – the diarrhea jigsaw
Reviewed and updated 5th July 2024Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine…
Neuroendocrine Cancer – were you irritated by your misdiagnosis?
Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? In preparation for writing this blog post, I…
Neuroendocrine Cancer: Those who know, know!
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…
Neuroendocrine Cancer – not average, just mean
Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…
Let’s talk about living with NETs
Snoopy has a point Opinion. There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question, but I believe there are times and places for it…
Metastatic Neuroendocrine Tumours – Incurable but treatable
Metastatic Neuroendocrine Tumours - incurable is not untreatable. When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able…
Dear Doctors – There’s no such thing as a ‘good’ cancer!
At a follow-up meeting during my diagnostic phase in July 2010, the specialist who was investigating my pre-diagnosis secondary care appointment, was clearly suspicious that I had cancer. As the results of my liver biopsy were not yet in, he was not in a position to declare his findings. However, following my revelation about flushing during this meeting, he immediately guessed the biopsy would confirm Neuroendocrine Tumour (NET). I can't remember much of the conversation but I vividly remember him indicating that of all the cancer issues out there to get, this was one of the better ones. He was using a meter analogy…
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Reviewed and updated 23rd January 2024 Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…
Living with Cancer – Turning points
In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the…
I bet my flush beats yours?
Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…
Surgery is risky but so is driving a car
I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs). To some extent, these debates continue,…
Neuroendocrine Neoplasms – not as rare as you think
UPDATE AS AT 5th OCTOBER 2025 - USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially)In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated as they have excluded some Neuroendocrine Carcinomas from the list…
Neuroendocrine Cancer – a difficult jigsaw
A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After…
“You must be doing OK, you’ve not had chemotherapy”
If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy. If you read any newspaper article about cancer,…
Neuroendocrine Cancer – don’t break my heart!
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, or the levels of serotonin ae not controlled following diagnosis, can lead to an additional complication known as Hedinger Syndrome (also known as Carcinoid Heart Disease (CHD)). However, late diagnoses can present with CHD already in place and in some cases, may have led to…
I look well but you should see my insides
I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away. I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around; the temporary beds and the waiting room are full and all I can see are people who don't look as well as I do. Some have hats or bandanas partly disguising the loss of hair. I feel for them.No matter how many visits I make, I can't help feeling out of place in a Cancer ward. I'm not…
I’m only as good as my last scan
"I'm only as good as my last scan". I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story…
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…