Pancreatic Neuroendocrine Tumours – surgical decisions and new research on molecular sub-types

Pancreatic Neuroendocrine Tumours – surgical decisions and new research on molecular sub-types

Research, Technical NETs
I offer you two subjects in one article but they are overlapping and very related. The piece of research in the 2nd half of the article is very exciting - did you know researchers have found there are two main sub-types of pNETs, one less likely to recur and metastasise than the other? This will hopefully lead to similar research in other types of Neuroendocrine Neoplasm. Background  I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma). Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that…
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Neuroendocrine Cancer: a needle in a haystack, primary vs secondary

Neuroendocrine Cancer: a needle in a haystack, primary vs secondary

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs
It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly  diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood. I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established - this drives the best treatment regime. Secondly in finding all the tumours, as this establishes the correct and…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Survivorship
I have a lot of be thankful for - I'm still here for starters! BUT ......… here's a list of 10 things I'm NOT thankful to Neuroendocrine Cancer for! Thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately I had a surgeon who had operated on many NET…
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Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
Diarrhea is a huge subject for NET patients, whether it's caused by the tumor itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life.  Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate.  I don't normally write articles on over the counter commercial products but this one is an exception given that it has been classed as a medical food since 2012 and is also used to rehydrate patients undergoing radiotherapy and chemotherapy for cancer (so not just for NETs).…
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I now take food with my medicine!

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs
If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds!  However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits. I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests.  Here, conversations bypass the weather and focus on being under the weather! I thought I was a regular when I started to recognise people in the queue (line!) and their pill conversations.  Statements such as "Yes, I just started a 'blue chap' "…
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Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

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

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

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
If I had a pound for every time I've said "make sure you get good surveillance and follow up", I'd have a lot of pounds! Most Neuroendocrine Tumours are slow-growing and they can be difficult to diagnose due to their sneaky nature. Some can be just as sneaky beyond diagnosis though. The best way to combat that is through regular surveillance or 'follow-up'. There are actually guidelines and recommendations for follow-up on the main NET specialist societies such as ENETS, NANETS and UKINETS.  There's others including in USA, the NCCN also have a set (and no surprises that the different organisation guidelines can often differ due to the healthcare systems in place). For more detailed or the latest guidelines content, you may need a login or in one instance (ENETS)…
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Update:  Management of Neuroendocrine Tumors

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Technical NETs, Treatment
This is an excellent and positive video based overview of where we are with the Management of NETs.  This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference.  This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too!  I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way - not seen it done this way before.   Slightly out of date as…
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Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs, Treatment
I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier".  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most of the time! I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer. I've recently had a ton of '7…
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Neuroendocrine Neoplasms – Can they be cured?

Neuroendocrine Neoplasms – Can they be cured?

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

Weight – the NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment
[caption id="attachment_11145" align="aligncenter" width="500"] Weight - The NET Effect[/caption] Firstly, let me say that I have no intention of advising you how to lose or gain weight!  Rather, I'd like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment.  Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues. I once wrote a patient story for an organisation and the headline was "Did you mean to lose weight".  Those were actually the words a nurse said to me after I nonchalantly told her I thought I'd lost some weight (....about half a stone).  I answered the…
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The shock effect never wears off

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
Patient stories are key to any awareness campaign.  Nothing like a human being standing up and letting you know about their experience.  Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that's fine. Many are from…
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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.   The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…
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NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …
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NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!).  July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie!  There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA.  Click here. Ipsen launches the German version of 'Living with NETs' website.  Click here. What's happening on my Blog Site?   As per above, a quiet month.  Due to the vagaries of…
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ASCO 2017 – Let’s talk about NETs #ASCO17

ASCO 2017 – Let’s talk about NETs #ASCO17

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field.  As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display.  This is fairly complex stuff but much of it will be familiar to many.  I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more.  For many the extract title and conclusion will be sufficiently educational or at least…
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Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

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

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

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  OPINION. There's a lot of inaccurate and out of date information out there.  Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda. Myth 1:  All Neuroendocrine Tumours are benign Not true.  By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'.  Sure, some NETs will be benign.  However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.  This has been…
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NETwork with Ronny © – Newsletter March 2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community. [caption width="500" id="attachment_9598" align="aligncenter"] with Grace Goldstein from Carcinoid Cancer Foundation[/caption] March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don't have an issue with private contact…
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In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

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 time. This alone is…
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NETwork with Ronny © – Newsletter February 2017

NETwork with Ronny © – Newsletter February 2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat).  Thank you all so much ♥ January's success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before.  If I grew at…
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It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan.  I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications.  There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can't get my head round why metastases from a small intestinal NET managed to get to this area but not others! Distant nodal metastasis treatment…
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Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer, Technical NETs
An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately called a Gastroscopy and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy).  An endoscope can also be inserted through a small cut (incision) made in the skin when keyhole surgery is being carried out. Gastroscopy During a routine 6 monthly check-up at the end of 2016, I mentioned to…
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Road ahead closed – Bowel Obstructions

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
OK - we've gone through diagnosis, we've gone through treatment and now we need to live with the consequences of cancer and it's treatment.  Not a day goes by when I don't feel some twinge or some minor pain and I think 'what was that?'.  Fortunately, many things can just be day-to-day niggles. It's the cancer .... easy to say, sometimes not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types).  In fact, even before diagnosis, a bowel obstruction rears its head as it can be how the condition is diagnosed in the first place, i.e. pain leads to more pain and that can sometimes result in…
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Neuroendocrine Cancer: Nodes, Nodules, Lesions

Neuroendocrine Cancer: Nodes, Nodules, Lesions

Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
A fairly common disposition of metastatic Neuroendocrine Tumours (NETs) is a primary with associated local/regional secondary's (e.g. lymph nodes, mesentery and others) with liver metastases.  Technically speaking, the liver is distant. However, many metastatic patients have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck.  In certain NETs, these might be an additional primary (e.g. in the case of Multiple Endocrine Neoplasia (MEN); or they could even be a totally different cancer. The worry with NETs is that the 'little suckers' can sometimes make these surprise appearances given that neuroendocrine cells are everywhere. Cancer doesn't just spread through the blood steam, it can also spread through the lymphatic system. This is a system of thin tubes (vessels) and lymph nodes that run throughout the body in the…
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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, Technical NETs, Treatment
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 big deal because NETs is one of a small number of cancers where debulking surgery can often provide a survival…
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Lanreotide vs Octreotide

Lanreotide vs Octreotide

Living with Neuroendocrine Cancer, Technical NETs, Treatment
[caption id="attachment_14732" align="aligncenter" width="502"] New delivery system for Lanreotide - solution and needle remains the same[/caption] Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed. Somatostatin is actually a naturally occurring hormone produced by the hypothalamus and some other tissues such as the pancreas and the gastrointestinal tract. However, it can only handle the normal release of hormones.  When…
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Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Awareness, Patient Advocacy, Technical NETs
  I 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 - incidence rate 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 (the remainder…
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Neuroendocrine Neoplasms (NEN) – benign vs malignant

Neuroendocrine Neoplasms (NEN) – benign vs malignant

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
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. NANETS Guidance talks about the '...heterogeneous clinical presentations and varying degrees of aggressiveness' and '...there are many aspects to the treatment of neuroendocrine…
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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, Technical NETs, 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 has to 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 have pretty…
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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
When I was diagnosed with metastatic 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 naive. 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 decisions. If you think about it, this is an advantage with low and medium grade NETs......you normally have some time to get the ducks…
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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, Technical NETs, 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: 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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Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
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 with NETs).  It's also possible that 'non-sydromic' issues such as stress and diet are contributing. It could be caused by other things such as Irritable Bowel…
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Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  [caption id="attachment_9913" align="alignnone" width="506"] incidence rising faster than all other malignant neoplasms[/caption] 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 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…
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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, Technical NETs
  Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer.  In the previous parts of this series I focussed on the following: Article 1 - Vitamin and Mineral Challenges.   This was co-authored by Tara Whyand, UK's most experienced NET Specialist Dietician.  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 followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as…
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Exercise and Cancer: Forward is Forward

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6521" align="aligncenter" width="500"] For Cancer patients, it’s not just about how fast, how high, how heavy, how much ............... it’s about DIRECTION.[/caption] One of the very first blog posts I wrote was about exercise. Basically I said it was medicine.  I have not changed that view, I really believe it.  All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will also help you cope mentally. There are numerous pieces of research which confirm cancer patients are at risk of succumbing to depression and anxiety in addition to issues with their physical condition. Research also indicates that exercise can help. In my blog "Exercise is Medicine", I discussed…
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What you don’t know might kill you

What you don’t know might kill you

Awareness, Treatment
[caption id="attachment_6337" align="aligncenter" width="700"] In Barbados Heaven.  I didn't know I had metastatic cancer but was about to find out on return to UK[/caption] A month before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday.  Both of us were looking forward to a nice break after a hectic start to 2010.  When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, whilst I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', Neuroendocrine Tumours were growing in my small intestine, spreading into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area.  The excess serotonin being released was causing a dense fibrotic retro-peritoneal reaction (desmoplasia)…
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Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, Technical NETs, Treatment
[caption id="attachment_6231" align="aligncenter" width="500"] IORT[/caption] New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil…
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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, Technical NETs, Treatment
Since my diagnosis, I seem to have been in a perpetual learning phase!  What not to do, what not to eat, what not to read!  However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control.  When I say "carcinoid syndrome" in this article, I only mean the syndrome that is caused by what was once  called "Carcinoid Tumors", i.e. mainly serotonin secreting types but include tumours which are well differentiated found in the small intestine, appendiceal, rectal, lung, and one or two other less common places.  There are many variations of this list but this is my take!  I suspect some of this also applies to other types of NETs…
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Never mind the Bollocks – here’s the cancer

Never mind the Bollocks – here’s the cancer

Awareness, Living with Neuroendocrine Cancer, Technical NETs
[caption id="attachment_15574" align="aligncenter" width="1280"] Graphics courtesy of The Sex Pistols[/caption] I don't tend to share some very personal stuff but this is on the boundary of that rule and there are some important messages to be teased out.  For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw)   As you can see from the title, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else.  You'll note they all begin with the letter 'S' except 'Comorbidities' and 'Coincidences'.  These 2 were actually retrospective add-ons to the blog title and there is…
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Neuroendocrine Cancer – my liver metastasis surgery

Neuroendocrine Cancer – my liver metastasis surgery

Technical NETs, Treatment
From day 1 of my diagnosis, I knew my liver was going to need some attention but I had always known that total removal of all tumours would not be possible. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery 'round 1' which took place Nov 2010 - I wrote about this as Part 1 and Part 2 stories.  As we are talking about my liver, it's worth noting that a bland Liver Embolization was carried out prior to 'round 1' as there was…
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Neuroendocrine Cancer – Incurable is not untreatable

Neuroendocrine Cancer – Incurable is not untreatable

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! I continue to see…
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Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

Technical NETs, Treatment
[caption id="attachment_4852" align="alignleft" width="301"] Image with permission from Dr Sam Hare (www.lungdiagnosis.com)[/caption] A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category.  Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages for those who have localised tumours less than 3cm and can't for whatever reason have surgery.  I've checked with…
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Alcohol – the NET Effect

Alcohol – the NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer
Opinion. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then.  When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It wasn't until I studied a bit more about my disease and the consequences of my treatment, that I decided I would cut right down.  This turned out to be a pretty drastic cut as I can count the…
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Neuroendocrine Cancer – a Doctor’s experience

General
[caption id="attachment_4617" align="alignleft" width="225"] Dr Michael Richardson - NET Cancer Patient[/caption] UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR'S STORY FROM THEIR WEBSITE BUT I'M TRYING TO OBTAIN THE SCRIPT ELSEWHERE. When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now.  I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening.  In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo. As we all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to…
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Lanreotide – it’s calling the shots!

Lanreotide – it’s calling the shots!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
  Please note a new syringe for Lanreotide will be available in 2019, at least in Ireland and UK which have confirmed dates (UK is end of June rollout begins).  However, Ipsen are committed to roll it out to the rest of Europe, US, Canada, Australia and New Zealand by end of 2019 (details to follow) following necessary regulatory approvals.  See photos below.  Further information will be communicated to healthcare professionals in advance of this, to enable them to inform their patients, whom have been prescribed Lanreotide. In addition, the patient information leaflet included in the packet will have clear instructions for use. There will be a prominent yellow box located on the outer carton of the medicine, alerting healthcare professionals and patients that a new syringe is contained inside.…
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Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living.  Rock and Roll!

Neuroendocrine Cancer Survivor Wilko Johnson – from dying to living. Rock and Roll!

Awareness, Inspiration, Living with Neuroendocrine Cancer
  [caption id="attachment_14806" align="aligncenter" width="785"] Wilko Johnson performing at The Royal Albert Hall, London on 26th September 2017[/caption] I recently blogged about a well-known BBC political reporter who has a Neuroendocrine Cancer with a Lung Primary.  However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer.  As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer.  I wrote about this anatomical issue here.  This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner had I published the Nick Robinson article, I was alerted to the broadcasting of…
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My Neuroendocrine Cancer Surgery – a patient experience (part 2)

My Neuroendocrine Cancer Surgery – a patient experience (part 2)

Living with Neuroendocrine Cancer, Treatment
The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.  It was also so much easier to get to the toilet, a much frequented area at the time :-) Surprisingly, the…
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My Neuroendocrine Cancer Surgery – patient experience (part 1)

My Neuroendocrine Cancer Surgery – patient experience (part 1)

Survivorship, Treatment
8th - 26th November 2010 Memories 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 number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients. Prior to being…
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Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Awareness, 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 less common disease :-)  I also started…
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Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes)

Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes)

Living with Neuroendocrine Cancer, Technical NETs
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. If I was to make a list of questions for my specialist/Oncologist at diagnosis, it would include "What is the stage, grade and differentiation of my cancer".  To enable me to synchronise with the documented guidance, I'm going to use the following WHO 2017 approved terms in this post: Neuroendocrine Neoplasm (NEN) - all types of Neuroendocrine tumour of whatever grade (please note Neoplasm is another word for tumour) Neuroendocrine Tumour (NET) - all well-differentiated tumours (an explanation of differentiation will be provided below) Neuroendocrine Carcinoma (NEC) - all poorly differentiated tumours…
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Not all Cancer is simple

General
[caption id="attachment_4135" align="alignleft" width="670"] Not all Cancer is simple[/caption] So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below).  Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with other conditions often with debilitating symptoms. Once diagnosed, surgery (if it's possible) is just one of a number of treatment options…
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I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs, Treatment
[caption id="attachment_7911" align="aligncenter" width="500"] There are different types of flush![/caption] Neuroendocrine Cancers 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 which have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects Neuroendocrine Cancer 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 Neuroendocrine Cancer can be extremely challenging.  Even for an experienced doctor, it can be a difficult jigsaw! Most types of Neuroendocrine Cancer can be accompanied by a 'syndrome' i.e. the tumours are 'functional' and…
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Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
OPINION.  Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients.  It is also a key factor in maintaining a decent quality of life and for most countries without adequate NET Specialist Dietitian support, it remains an unmet need. In this article, I'm discussing the use of probiotics to combat the potential issue of small intestine bacterial overgrowth (SIBO) in Neuroendocrine Tumours.   When I first indicated this nutrition series was under construction, a few people got quite excited anticipating me to produce advice on what to eat.  However, that was never my intention. What people should or should not eat is such a varied problem (or solution?) that anything I said would only really be of help to those for whom it worked - this area is…
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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
[caption id="attachment_3720" align="aligncenter" width="400"] Perceptions[/caption] 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 having treatment since 2010. However, this thought doesn't seem to balance it out - some…
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Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis

Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs, Treatment
One of the curious things about Neuroendocrine Cancer (NETs going forward) is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'.  Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease".  Having a syndrome can often be the difference between having a 'functional' condition or a non-functional' condition - see more below. This frequently makes Neuroendocrine Cancer very difficult to diagnose quickly.  It's a very devious disease. It's not all about Carcinoid Syndrome! Most people think of Carcinoid Syndrome when they discuss NETs. Anyone suggesting that all NET patients get carcinoid syndrome or that all symptoms of NETs are caused by carcinoid syndrome,…
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‘Chinese Dumplings’ and Neuroendocrine Cancer

Technical NETs, Treatment
[caption id="attachment_3653" align="aligncenter" width="477"] Chinese dumplings[/caption] One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology last month (June 2015).  I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer. This is an article about something generally described as "Intra-operative Chemotherapy", i.e. the administration of chemo during surgery.  This isn't any old article - this is written by someone who is very well-known in Neuroendocrine Cancer circles - Dr. Yi-Zarn Wang.   The general idea behind this isn't exactly new as there's also a procedure known as HIPEC (Hyperthermic Intraperitoneal Chemotherapy) or "chemo bath".  This is mostly used intra-operatively for people with advanced appendiceal cancers…
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Sorry, I’m not in service

Sorry, I’m not in service

General
Featured by Macmillan Cancer - check out this link. Featured by Cancer Knowledge Network - check out this link. It's good to be busy, it can take your mind off stuff you don't really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer.  I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less. I guess the image of 'invincibility' was important to me at that time.  It was part of my personal…
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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, Technical NETs, 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

Treatment
I enjoyed reading the recent blog 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 able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn (fall) 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).  Another difficult issue for NETs can be the decision to cut or not to cut - as outlined in this article. NETs are not that much different to other Cancers in this respect - there…
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I may be stable (..ish) but I still need support and surveillance

I may be stable (..ish) 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…
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Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, 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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