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

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

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION - nothing in here should be taken as advice from the author. On paper, surgery remains the only potentially 'curative' option for Neuroendocrine Tumours (NETs) but there are stage, grade and anatomical constraints to that opinion. Many people get 'twitchy' about any inference of the 'C word' (cure) but our most eminent NET specialists use the term frequently including in the major treatment guidelines. I use the word 'curative' with some reservations because for many who are diagnosed at an advanced stage, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to palliate symptoms and improve quality of life. This is a…
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Keep your lights burning

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…
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Palliative Care – it might just save your life

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…
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“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
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 systemic chemotherapy.  If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.Sure, chemotherapy is not the nicest treatment to receive, and it does…
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Neuroendocrine Cancer – If you can see it, you can detect it!

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email BackgroundScanning is a key diagnostic support and surveillance tool for any cancer.  Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it.  Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer.When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and I always suggest people should try to get one.  Even in the…
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Neuroendocrine Cancer – Exciting Times Ahead!  

Neuroendocrine Cancer – Exciting Times Ahead!  

Inspiration, Survivorship, Treatment
In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc.  Some of the announcements are just expansions of existing therapies having been approved in new (but significant) 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 need access to the best diagnostics and treatments for them; and at the requisite time.  There's even more in the pipeline and I'm hoping to continue to bring you news of new stuff as I have been doing for the last year. Some of these new diagnostics and treatments will benefit eligible patients who are…
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Living with NETs – a patients included award winning site

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…
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Neuroendocrine Cancer: Hurry up and wait

Neuroendocrine Cancer: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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. My expectations of speed turned out to be wildly inaccurate and in hindsight, I was also wildly naïve. You see, 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 good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan. I'm quite happy and content they took their time, rather than rush into the wrong…
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Did you hear the one about the constipated NET patient?

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment
[caption id="attachment_7646" align="aligncenter" width="591"] did you hear the one about the constipated NET Patient?[/caption] 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 find myself with feelings of constipation from around 4-5 years after my treatment and I set…
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Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…
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Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read more. I've mentioned Steve Jobs a few times previously, mainly…
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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…
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“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…
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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…
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Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Diarrhea can be a symptom of many conditions but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, 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…
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Neuroendocrine Cancer – not average, just mean

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 the 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 than ever are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status. Sadly, some won't make it and more must be done to change that. Most lower grade well differentiated NETs are not like that! Whilst they have a reputation for being…
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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,…
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Not every illness is visible

Not every illness is visible

Awareness, Living with Neuroendocrine Cancer, Survivorship
I personally don't see myself as 'disabled' but I do have an invisible illness. I'm fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do! [caption id="attachment_13469" align="aligncenter" width="720"] Situation normal, right? [/caption] I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain).  Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and…
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Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following:Article 1 - Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK's most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.Article 2 - Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.Article 3 - 'Gut Health'. This…
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Living with Cancer – if you’re reading this, you’re surviving

Living with Cancer – if you’re reading this, you’re surviving

Inspiration, Living with Neuroendocrine Cancer, Survivorship
Life after cancer is about more than just survival. It’s not just the length of life that matters, but also the quality of that life. Join us as we #CelebrateLife and raise awareness of the challenges of cancer survivorship on National Cancer Survivors Day, June 6. #NCSD2021 For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was gong to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by…
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Neuroendocrine Cancer: Troublesome Thyroids

Neuroendocrine Cancer: Troublesome Thyroids

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In 2013, just when I thought everything seemed to be under control, I was told I had a 'lesion' on the left upper lobe of my thyroid.  At the time, it was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease.  The thyroid gland does in fact get mentioned frequently in NET patient discussions but many of the conversations I monitored didn't seem to fit my scenario - cue relentless study! I've been meaning to write this blog for some time but here is a synopsis of my research translated into 'patient speak'.  This is intentionally…
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Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 and that a public forum is not the place to have it. The…
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The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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.…
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Don’t worry, I really am OK!

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…
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Neuroendocrine Cancer: I Can

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 –…
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Neuroendocrine Cancer – it takes guts

Neuroendocrine Cancer – it takes guts

Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The majority of Neuroendocrine Tumours (NETs) are slow growing (well differentiated).  However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence.  Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments.  Moreover, in most cases, the appearance of a functional tumour often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise without syndromes, i.e. they are non-functional. These may become functional at some point in the future. However, with most slow-growing NETs, this does not mean terminal as there are various treatment options…
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I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and 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 5HIAA are clearly useful 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 and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…
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“Trust me, I’m a Doctor”

“Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
One of the most frequent posts on 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 secondary care level, certain less common conditions still need dedicated specialists and these services…
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Neuroendocrine Cancer – Incurable but treatable

Neuroendocrine Cancer – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist said " ... 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 to take notes at important meetings with Oncologists! [caption id="attachment_16343" align="aligncenter" width="640"] what…
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Lanreotide – it’s calling the shots!

Lanreotide – it’s calling the shots!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
On 9th December 2020, I celebrated 10 years of Lanreotide - click here to read about that.My Lanreotide ExperienceWhen I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot).  Technically this is a hormone therapy (it's not chemo).Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life.  Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects.  Check out…
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Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)

Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)

Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  This is a personal story but a more technical description of Small Intestine surgery for a NET can be found here.8th - 26th November 2010Memories of my 18 day stay in hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NETs is one of a small…
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Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…
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Your Money or Your Life

Your Money or Your Life

Inspiration, Survivorship, Treatment
As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients.  I've been following her story for almost 2 years and she has really inspired me.  The title of this article is based on the title of a TV programme about her and her campaign to gain access to new drugs.  I had chatted with Danielle online about some of the story below and I hope I've interpreted it correctly.   RIP…
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Scanxiety – I just don’t get it!

Scanxiety – I just don’t get it!

Inspiration, Survivorship
OPINION The internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans.  Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting on the results of a biopsy, blood test, urine test, or anything else related to an illness.  No-one goes around saying 'blood-testxiety' or 'biopsyxiety'. Why scans? ‘Scanxiety’  - I just don't get it  ......or more accurately I just don't get overly anxious about having a scan or…
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I look well but you should see my insides

I look well but you should see my insides

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 is 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 on a Cancer ward. I'm not sure why I feel like this; after all, I've had some very scary surgery and I've been…
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I’m still here

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…
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Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment
This 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 malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presenting symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case,…
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Surgery is risky but so is driving a car

Surgery is risky but so is driving a car

Survivorship, Treatment
  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, particularly for pancreatic NETs. Surgery for certain NETs in certain scenarios is a controversial issue for NETs - as outlined in this article - to cut or not to…
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I may be stable but I still need support and surveillance

I may be stable but I still need support and surveillance

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing the cancer hasn't changed over time. One of the disadvantages of 'incurable but treatable' is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place,…
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Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome.  Neuroendocrine Tumours secreting excess amounts of serotonin, can be accompanied by Carcinoid Syndrome which if not diagnosed and treated early enough, can lead to an additional complication known as Hedlinger Syndrome (often known as Carcinoid Heart Disease (CHD)). However, very late diagnoses can present with CHD already in place. Excess serotonin, a hormone released by NETs into the bloodstream seems to be the prime and lead suspect for causing thick ‘plaques’ or fibrosis tissue within the heart muscle and damage to (mainly) the tricuspid and pulmonary valves on the right side of the heart which can become ‘tightly narrowed’ or ‘leaky’.  It's very similar to the reasons for mesenteric and peritoneal…
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Please flush after use!

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 -…
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Chasing normality

Living with Neuroendocrine Cancer, Survivorship, Treatment
Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured.  More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments. For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests.  As I continue living with my cancer, that tempo doesn’t…
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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

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…
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No Fear

No Fear

Inspiration, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 5HIAA and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary.  Why? Because testing is one thing that's going to keep me alive for as long as possible.  If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough.  Even in the event…
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Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience and we met some really interesting people on our 6-day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was therefore relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what's going on inside…
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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…
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Surgery – the gift that keeps on giving

Survivorship, Treatment
As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by removing or destroying disseminated tumour metastases'.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I'm still alive and kicking and don't feel too…
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Every Day is World NET Day!

Every Day is World NET 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 NET 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". The build-up to these events normally doesn't start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held,…
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I woke up on World NET Day

I woke up on World NET Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 1 year after 2 x surgery Macmillan Cancer Support featured this post CKN featured this post It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body.  I can still remember the feeling today; it was like I was pinned to…
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Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial.  I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
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