Patient Advocacy - Ronny Allan - Living with Neuroendocrine Cancer

21Mar 2017 by Ronny Allan 29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

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

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 to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them, and at the requisite…

20Mar 2017 by Ronny Allan 3 Comments

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="attachment_11078" align="aligncenter" width="500"] As featured by Cure Magazine[/caption]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 dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early…

21Feb 2017 by Ronny Allan No Comments

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed his presentation on NETs at a recent 2016 Symposium, and shed light on the progress that has been made in this treatment landscape. OncLive: Please highlight some of the main points from your…

14Jan 2017 by Ronny Allan 7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Surgery can sometimes be a tough call (......to cut or not to cut?)It is an area where I have some sympathy for physicians and surgeons who sometimes have tough decisions to make. Surgery is risky, particularly where people are presenting in a weak condition, perhaps with very advanced disease, secondary illness and comorbidities. I also suspect age is a factor (I was surprised to find myself considered 'young' at 55). Physicians and surgeons need to weigh up these risks and the consequences of the surgery against a 'watch and wait' or alternative non-surgical approach. This would normally be discussed via a 'Tumor Board' or Multi-Disciplinary Team (MDT) meeting. However, and although imaging helps, the situation is not really 100% clear until the surgeon 'gets inside'. Remember, all physicians and surgeons…

18Dec 2016 by Ronny Allan 6 Comments

Keep your lights burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday. And 'Bravado' is not only acceptable, it's mandatory! A week later, I received a very nice Christmas card from my old friend with a message which included "...... the old light is still burning brightly". It was a metaphor but something I…

14Dec 2016 by Ronny Allan 4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

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

Updated 6th August 2023I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge.So, let's get definitions out of the way:Pheochromocytomas (Pheo for short)Pheochromocytomas are tumours of the adrenal gland that produce excess adrenaline. They arise from the central portion of the adrenal gland, which is called the adrenal medulla…

06Dec 2016 by Ronny Allan 8 Comments

Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

Inspiration, Patient Advocacy

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Very happy to win the WEGO 2016 Best in Show Community which is some ways is a recognition for my blog based on the fact is at the core of what I do and in many ways, the other apps are (currently) just 'fronts' for this output. Whether you read my blog direct from WordPress, Facebook, Twitter, Pinterest or any other platform you find it, you are all members of this award-winning community! My WEGO Profile is here - look out for the updates! I'll expand this blog once the dust settles as this award opens up new avenues for the Neuroendocrine Cancer (NETs) and I'll be involved in new and exciting…

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…

28Nov 2016 by Ronny Allan 18 Comments

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient Advocacy

OPINION:One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question. It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET specialist let alone a doctor who is not familiar with the disease.Going forward I'm mostly intending to use the term Neuroendocrine Tumours (NETs) as that is where the problem lies.NANETS Guidance talks about the '...heterogeneous clinical…

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…

26Oct 2016 by Ronny Allan 7 Comments

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. It was subsequently launched on NET Cancer Day 2016 and is very aptly named 'Living with NETs'. Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative. And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018. I'm quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site…

21Oct 2016 by Ronny Allan 1 Comment

Diagnosed with Neuroendocrine Cancer: Hurry up and wait

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

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that.The complexity of the condition needs some consideration as the physicians work up a treatment plan, when physician work within a NET structure, other doctors can be involved and rushing into a lone person decision sometimes has adverse effects. I'm quite happy and content they took their time,…

11Oct 2016 by Ronny Allan 9 Comments

Neuroendocrine Cancer – were you irritated by your misdiagnosis?

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

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.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? I just spent a few hours doing an online training course on IBS and I want to pass on some stuff I found to be very useful. I have never been diagnosed with IBS but having researched the issue through some training, I can understand why it might be in the thoughts of a general practitioner for many scenarios. Much of my research was focussed on the British Society of Gastroenterology (BSG) who sponsored the online course I completed which also used…

01Oct 2016 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Patient Power!

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

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in abundance and they will normally be patients diagnosed with the big 4 cancers. This is not surprising as these tend to affect more people. However, the ratio of NET Cancer…

28Sep 2016 by Ronny Allan 23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy

BackgroundSome people on hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Cancer. Most of them will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. In a nutshell, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a physician's reaction to symptom presentation or maintenance/surveillance of an existing diagnosed condition. Sometimes, abnormal results will lead to more specialist tests.In cancer, these tests are frequently called 'markers'. Most tumour markers are made by normal cells as well as by cancer cells; however, they are produced at…

19Sep 2016 by Ronny Allan 5 Comments

“Not the Stereotypical picture of sick”

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

I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others? I like to look for the positive things these well-meaning messages can convey. Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell? If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides". Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the 'perfect picture of health'. She…

19Sep 2016 by Ronny Allan 14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="" align="aligncenter" width="460"] Stiff upper lip[/caption] It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work? In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in my case........ or was it my stiff upper lip? 20 months prior I had a colonoscopy after a short-term change of stool colour. Nothing…

15Sep 2016 by Ronny Allan 19 Comments

Neuroendocrine Cancer – the diarrhea jigsaw

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

Diarrhea 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 problems such as hyperthryoidism, mastocytosis or Addison's disease (which may be secondary illnesses in those with NETs). It's also possible that 'non-sydromic' issues such as stress and diet are contributing. It could be caused by…

12Sep 2016 by Ronny Allan 1 Comment

WEGO Health Patient Leader: Ronny Allan – Living with Neuroendocrine Cancer

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

WEGO Health has the largest network of patient leaders in the world. Every year they recognise them via their renowned awards process. I first discovered them in 2016 and decided to apply. As at 2021, I have now won 3 awards, been in 8 finals following around 27 nominations for various categories. WEGO Health and many of their patient leaders now know about Neuroendocrine Cancer. The story of WEGO Health and my experience with them is outlined below. I encourage you to watch the 2021 announcements below, so inspiring. The 2021 awards were special because all records were broken in terms of nominees. From 21,000, that had to be reduced to just 96, 6 in each of 16 categories. It's quite a feat just to get into the finals and…

08Sep 2016 by Ronny Allan 20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series

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…

25Aug 2016 by Ronny Allan 5 Comments

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 disease is a common term I see). Most NETs are not like that! Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades…

24Aug 2016 by Ronny Allan 8 Comments

Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="attachment_6724" align="aligncenter" width="2896"] Medicine![/caption]"Yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we?For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "We must do this one day......."I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500" campaign which fortunately and timely sparked us into gear.As a patient with incurable cancer, life can be tough on the body and mind. However, I've no intention of…

02Aug 2016 by Ronny Allan 4 Comments

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

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

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?Reviewed and updated 11th July 2023BackgroundNutrition 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 for you is the one that works for you. I like to focus on why such things might have an effect - patients can then experiment and see what works for them. Sometimes…

07Jun 2016 by Ronny Allan 7 Comments

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

[caption id="attachment_6092" align="alignnone" width="500"] that's me in the middle[/caption] 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 NET patient, I found out my 5-year survival rate was only 38%. It looked like a credible site but I now…

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. predominately serotonin secreting types which mainly metastatic cases where the well differentiated tumours are found in the small intestine, but much less commonly in appendiceal, very rarely in rectal (rarely even at stage IV), lung (more atypical and around 10%), and one or two other significantly less…

19May 2016 by Ronny Allan 9 Comments

Don’t worry, I really am OK!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="attachment_6843" align="aligncenter" width="377"] I really am OK![/caption] I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer". The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly, as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'. For the uninitiated, I'm defining this as "One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence." That perfectly explains the accompanying graphic! That definition also covers the two key themes above, talking…

09May 2016 by Ronny Allan 5 Comments

Neuroendocrine Cancer: I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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. When I wrote my blog post "Living with Neuroendocrine Cancer - it takes guts", that wasn't me being one of those trendy bloggers saying the sort of things people want to hear. Nor was my post "Neuroendocrine Cancer –…

18Feb 2016 by Ronny Allan 12 Comments

Patient power – use it!

Inspiration, Patient Advocacy

[caption id="attachment_4931" align="alignleft" width="300"] Team Effort[/caption] I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors. However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication. The blog then commented on a number of tips for better doctor-patient relationship and communication. These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the…

11Feb 2016 by Ronny Allan 12 Comments

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it.....). Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010. The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect. If you have metastatic Neuroendocrine Cancer, you see medical staff a lot! Relationships and communication can therefore become more important than ever.However, people with less common conditions can perhaps be more difficult to satisfy. A 'generalist' doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at the…

02Feb 2016 by Ronny Allan 21 Comments

Metastatic Neuroendocrine Tumours – Incurable is not untreatable

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

OPINION. 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 " ... perhaps just months ........". 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 to live for a lot longer". Fortunately, my wife Chris heard it all and I was refocused. "OK Doc - let's go" I said. Always take someone with you…

06Nov 2015 by Ronny Allan 8 Comments

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

A couple of years ago, I received a request from a reader asking if I would write an article about 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 eyebrows 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. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it's an almost impossible task for a wee Scottish guy with…

27Oct 2015 by Ronny Allan 25 Comments

Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Patient Advocacy

One of the most discussed and sometimes confusing subjects on forums is the staging and grading of Neuroendocrine Neoplasms (NENs). Mixing them up is a common error and so it's important to understand the difference despite the apparent complexity.Stage vs GradeIn the most basic of terms, stage is the spread or extent of cancer and grade is the aggressiveness of cancer. They are totally different things and an understanding of both is important as they are critical to predicting outcomes (to a certain extent) and guiding therapy. There is no correlation between the two, you can have the lowest grade with the highest stage (actually very common with NETs). Remember S for Stage (Spread), G for Grade (Growing fast or slow)The stage is essentially worked out via scans and biopsy,…

05Oct 2015 by Ronny Allan 7 Comments

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

BackgroundNeuroendocrine 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, many diagnoses of NET can be extremely challenging. Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but not always)…

26Jul 2015 by Ronny Allan 48 Comments

I’m still here

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

I was diagnosed with metastatic Neuroendocrine Cancer - 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 of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will handle it their own way - and that's perfectly understandable.The 5-year milestone was significant, I…

07Jul 2015 by Ronny Allan 30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world. Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…

11Jun 2015 by Ronny Allan 24 Comments

Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?

Awareness, Patient Advocacy

OPINIONWhen I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient! So, I left it after the reigning clique found I didn't want to be part of their pity party.p.s. by "Forums", I mean any online group. Joining forums/online patient groupsIn 2013/14, I joined several large Facebook closed groups which function as forums. After…

19May 2015 by Ronny Allan 5 Comments

Please flush after use!

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

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 was 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 in the upper torso - the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer. "Please flush after use" - erm...yes sure but actually -…

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…

27Apr 2015 by Ronny Allan 11 Comments

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship

But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer. They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks. The vast…

22Apr 2015 by Ronny Allan 41 Comments

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy

OPINION There'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 here Edit May 2020. So, what about other areas not included in…

22Mar 2015 by Ronny Allan 23 Comments

The trouble with the NET (Part 1) – Cancer Myths

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship

Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news. Unfortunately, social media 'misinformation' includes 'alleged' cures for various ailments including cancer. I think we've all been there, we check twitter, Facebook, Pinterest etc…

03Feb 2015 by Ronny Allan 27 Comments

Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide: 10 more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015. In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama's 'four more years' tweet was the biggest retweeted post ever up to that point after he thanked his 22 million…

05Dec 2014 by Ronny Allan No Comments

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer). Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient. For me, this can be attributed to a number of…

10Nov 2014 by Ronny Allan 2 Comments

Every Day is World Neuroendocrine Cancer Day!

Awareness, Inspiration, Patient Advocacy, Survivorship

Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer". And if we use just "NET" then in epidemiological terms we exclude the Neuroendocrine Carcinoma guys who need just as much awareness as we do (perhaps more). The build-up to…

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…

26Aug 2014 by Ronny Allan 3 Comments

If your Doctors don’t suspect something, they won’t detect anything!

Awareness, Patient Advocacy

Opinion One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient.Neuroendocrine Neoplasms - Under-diagnosed or Under-reported?Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a number of 'difficult to diagnose'…

30May 2014 by Ronny Allan 2 Comments

Hadrian’s Wall Day 5 – Pass the morphine!

Patient Advocacy

[caption id="attachment_1087" align="aligncenter" width="2448"] Me Resting![/caption][caption id="attachment_1088" align="aligncenter" width="480"] The M6![/caption]When I was in hospital for major surgery, I remember being briefed by my excellent nursing staff about all the tubes and pipes intruding and protruding into/from my body. One of the most important ones in the early days was known as PCA - Patient Controlled Analgesia. Basically, I could click a button whenever I felt the post-surgical pain was too much. As this administered morphine, safeguards were built in - for example, the machine limited me to 2 clicks within 5 minutes and then it wouldn't accept a request for another 5 minutes. That handheld push button device was never far away from my hands!I could have done with it today. Yesterday I felt my right knee going downhill…

29May 2014 by Ronny Allan 2 Comments

Hadrian’s Wall Day 4 – Welcome to Cumbria!

Patient Advocacy

[caption id="attachment_16938" align="aligncenter" width="640"] Day 4 highest point[/caption][caption id="attachment_1030" align="aligncenter" width="640"] Lanercost Priory - the end of Day 4[/caption][caption id="attachment_1034" align="aligncenter" width="480"] Milecastle 48 - Poltross Burn[/caption]That was a long day and a hard walk! Started at Steel Rigg and ended at Lanercost and we were accompanied by our friend and ex-Army colleague, Jim Waterson. Jim and I served together in Germany 1977-79 and then again in Blandford Dorset 1983-84. Usual banter all day brought back more memories and news about some old mutual friends. Thanks to Jim for a great day. Thanks also to Jennifer for picking us up to take us to the start point on the wall and vice versa at the end.The route was a mixture of hilly crags and rolling fields as we entered Cumbria.…

28May 2014 by Ronny Allan 5 Comments

Hadrian’s Wall Day 3 – Spectacular but wet!

Patient Advocacy

[caption id="attachment_977" align="aligncenter" width="480"] The lone sycamore - famous for being in a Robin Hood film[/caption][caption id="attachment_978" align="aligncenter" width="480"] Chris & Dave being daft[/caption]Chris and I adopted the famous military 'buddy buddy' system this morning by checking each other's feet and applying blister pads. We then set off on a hilly section with some spectacular scenery. But first we collected our friend Dave Taylor who was walking this tough section with us.The forecast rain didn't arrive until around an hour into the walk and then another hour after that it was time for waterproof trousers. Pretty rough underfoot with plenty mud and damp grass. Stonework was in some places dangerously slippy. I fell once, fortunately I managed to miss landing on the ubiquitous sheep droppings!Some of the scenery…

Category: Patient Advocacy