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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Ronny Allan – Living with Neuroendocrine Neoplasms – Thanks a MILLION

Ronny Allan – Living with Neuroendocrine Neoplasms – Thanks a MILLION

Awareness, Patient Advocacy, Survivorship
I'm totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019. When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would still be doing it today reaching one million hits and accumulating over 14,000 followers across all my social media sites.  This is an update of an article from 7 March 2018 when I passed the 500,000 mark - so that is a staggering half a million views in 15 months to double that tally.  All thanks to you! My key aims are international level awareness, advocacy, campaigning, and support for NET patients…
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Neuroendocrine Cancer: Diagnosing the Undiagnosed

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In some cases, many people don't feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if left too long it can be life threatening - CLICK HERE to find out why. The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to…
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64Cu-DOTATATE – a potential expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer?

64Cu-DOTATATE – a potential expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer?

Clinical Trials, Living with Neuroendocrine Cancer, Technical NETs, Treatment
Edit 10 Jan 2019: RadioMedix and Curium Announce FDA Fast Track Designation For 64Cu-Dotatate.  Read more by clicking here. Edit 22 Aug 2019.  US FDA announced approval of Ga68 DOTATOC.  There's an overlap to this story.  Read more here. Curium and RadioMedix Inc. announce an exclusive agreement to develop and commercialize 64Cu-Dotatate, an investigational positron emission tomography (PET) diagnostic agent for patients with Neuroendocrine Tumors (NETs). RadioMedix is currently engaged in Phase III clinical trials of the agent and expects to file a New Drug Application with the Food and Drug Administration in 2019. This partnership builds on the initial development work conducted by RadioMedix and will benefit from Curium’s regulatory, manufacturing, distribution, and commercial expertise. The radionuclide is not new, it's been in use for some time, mainly in…
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Namaste Irrfan Khan

Namaste Irrfan Khan

Awareness, Living with Neuroendocrine Cancer
Irrfan Khan, Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of Pi, Jurassic World, The Amazing Spider-Man, has been diagnosed with a Neuroendocrine Cancer. What type of NET? Irrfan released information on 19 June 2018 indicating it was a high grade Neuroendocrine Cancer - although there is no detail of the 'differentiation' that would indicate a 'Neuroendocrine Tumour' (NET) or a 'Neuroendocrine Carcinoma' (NEC). There have been no confirmed reports about the primary location. Read his "Note from London" here Where is he being treated? Irrfan initially said he would be travelling "overseas" for treatment. Fox News (USA) said that "he hasn't elaborated on his treatment plan, though he did say he would be treated somewhere outside the U.S." This has been contradicted by other online sources in…
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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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PRRT – The Sequel? – Clinical trial of Targeted Alpha-emitter Therapy (TAT) –  212 Pb-AR-RMX

PRRT – The Sequel? – Clinical trial of Targeted Alpha-emitter Therapy (TAT) –  212 Pb-AR-RMX

Living with Neuroendocrine Cancer, Technical NETs
[caption id="attachment_12014" align="aligncenter" width="500"] Radioimmunotherapy[/caption] In 2018, RadioMedix Inc. and Areva (parent company Orano Med) initiated the Phase 1 trial for AlphaMedixTM in patients with somatostatin receptor (SSTR) positive Neuroendocrine Tumors (NETs) - an NIH supported trial. AlphaMedixTM is composed of a somatostatin analogue radiolabeled with 212Pb, an isotope used for Targeted Alpha-emitter Therapy (TAT).  This open-label, dose escalation study’s objective is to determine safety, bio-distribution, and preliminary effectiveness of 212 Pb-AR-RMX in adult patients with differentiated (sic) NETs. "Targeted Alpha-emitter Therapy (TAT) is the wave of the future in nuclear oncology and has a tremendous potential to treat patients with NET and overcome some of the limitations of current Peptide Receptor Radionuclide Therapy (PRRT)” said Dr. Ebrahim S. Delpassand, Chairman and CEO of RadioMedix, sponsor of the trial. They further announced on 21…
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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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NETwork with Ronny © – Community Newsletter OCTOBER 2017

NETwork with Ronny © – Community Newsletter OCTOBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Hi NETworkers! Welcome to Ronny Allan's Community newsletter for October 2017.  A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site.  I suspect the number of shares will never be beaten (652 in 36 hours).  31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017.  It also made October 2017 the highest monthly views ever.  I am so grateful to those who made that happen ♥ What's in the NET News The following news items may be of interest:   The huge (but expected) news…
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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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Genetics and Neuroendocrine Tumors

Genetics and Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Survivorship, Technical NETs
In my article 'Ever wonder what caused your NET', I concluded that currently, the only known scientifically explained causes for NETs were hereditary/genetic in nature.  This is mostly associated with those who have MEN syndromes (yes, they are a syndrome not a type of tumour) and a few other less common types of NET including Pheochomocytoma/Paraganglioma (Pheo/Para) and Medullary Thyroid Carcinoma (MTC) (the familial version of MTC is often referred to as FMTC). However, please note this does not mean that all those diagnosed with pancreatic, parathyroid, pituarity, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors. In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in…
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Cancer Isn’t All About Me

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption] [caption id="attachment_4318" align="aligncenter" width="500"] It's about others too[/caption] Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I…
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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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NETwork with Ronny © – Community Newsletter JUNE 2017

NETwork with Ronny © – Community Newsletter JUNE 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 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: NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here. Personalised PRRT is highlighted.  Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS.  I've not watched them all yet due to holiday but they are always great!  Click here. PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out…
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NETwork with Ronny © – Community Newsletter MAY 2017

NETwork with Ronny © – Community Newsletter MAY 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces 'Highlights' which will be renamed to 'NET Cancer Blog Activity' and cover my efforts to generate awareness and to help others. NET News The…
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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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NETwork with Ronny © – Newsletter April 2017

NETwork with Ronny © – Newsletter April 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking here. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in…
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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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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 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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Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook page.  So I'm thinking of y'all today! Now ........ I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (... so I'm told!).  And also a nap right after it’s eaten..... right? As you know I like to analyse such things ...... Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My google alerts feed increases around this time of…
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Palliative Care – it might just save your life

Palliative Care – it might just save your life

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

Neuroendocrine Cancer – Exciting Times Ahead!  

Inspiration, Survivorship, Technical NETs, 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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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 – 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, Technical NETs
Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (Irritable Bowel Syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future?  I just spent a few hours doing an online training course on IBS and I want to pass on some stuff I found to be very useful. I have never been diagnosed with IBS but having researched the issue through some training, I can understand why it might be in the thoughts of a general practitioner for many scenarios.  Much of my research was focussed on the British Society of Gastroenterology (BSG) who sponsored the online course I completed which also…
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Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
I think most people have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. In a nutshell, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a physician's reaction to symptom presentation or maintenance/surveillance of an existing diagnosed condition. Sometimes, abnormal results will lead to more specialist tests. In cancer, these tests are frequently called 'markers'. Most tumour markers are made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions. These substances can be found in the blood, urine, stool, tumour…
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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

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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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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Make some noise for a silent cancer

Make some noise for a silent cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer (or NETs), its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people's interest. In the last 36 months, I've generated a few 'different' awareness campaigns, some of which have been more successful than others and I learn from this.  One of them is actually now the most tweeted post about NETs on twitter.  Fortunately, I have had significant help from YOU because if you did not share my posts…
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It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
[caption id="attachment_6092" align="alignnone" width="500"] that's me in the middle[/caption] When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date.  As a novice NET patient, I found out my 5-year survival rate was only 38%.  It looked like a credible site but I now…
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Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer
[caption id="attachment_5953" align="alignnone" width="480"] Day 4 of 6 - entering Cumbria from Northumbria[/caption] In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more.   A few months before this trek, I had come to a crossroads and I was unsure which direction to go.  That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited…
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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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Dear Doctors – There’s no such thing as a ‘good’ cancer!

Dear Doctors – There’s no such thing as a ‘good’ cancer!

Awareness, Living with Neuroendocrine Cancer
At a follow-up meeting during my diagnostic phase in July 2010, the specialist who was investigating my pre-diagnosis secondary care appointment, was clearly suspicious that I had cancer. As the results of my liver biopsy were not yet in, he was not in a position to declare his findings.  However, following my revelation about flushing during this meeting, he immediately guessed the biopsy would confirm Neuroendocrine Tumour (NET).  I can't remember much of the conversation but I vividly remember him indicating that of all the issues out there to get, this was one of the better ones.  He was using a meter analogy action with his hands swinging towards the 'good' reading!  I hadn't gone there that day to receive a cancer diagnosis but he was clearly trying to put me at ease and I'm sure it was with the best…
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Carcinoid – What’s in a name?

Carcinoid – What’s in a name?

Awareness, Technical NETs
A quick primer on the word 'CARCINOID'.  It originates from the term 'Carcinoma-like'.  'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'.  This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion (..... and anger!). The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed out by the World Health Organisation (WHO) in 2010 subsequently updated by WHO 2017.  The correct term for all types is actually Neuroendocrine Neoplasm (NEN) which is an umbralla…
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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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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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Ignore this post about Neuroendocrine Cancer

Ignore this post about Neuroendocrine Cancer

Awareness
When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally discovered.  It is very very very sneaky. Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking - however, it will…
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Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

Technical NETs, Treatment
[caption id="attachment_8939" align="aligncenter" width="500"] Click this picture to see how VDAs work[/caption] {NEW} added 4 June 2019 From ASCO 2019 conference extract: Of the 17 patients enrolled, 16 completed the 12-week trial. One patient was not evaluable due to noncompliance. No DLTs were observed at day 21. The highest dose of 10 mg daily oral everolimus in combination with weekly 60mg/m2 IV fosbretabulin is the RP2D. No grade 4 or 5 toxicities were noted. Grade 3 toxicities were seen in 5 patients; abdominal pain and hyperglycemia (not related to study drug), fatigue (possibly related), decreased lymphocyte count and anemia (related). Several patients had delay in treatment due to grade 2 AE’s (GI symptoms, rash, thrombocytopenia) and one patient was unable to complete treatment due to pneumonitis. All evaluable patients except…
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NET Cancer Blog – 2015 in review

General
The WordPress.com stats team have prepared a 2015 annual report for my blog.  Special thanks to those who got a mention! Why not review my posts which received a 2015 Mention in Despatches ? Here's an excerpt: Madison Square Garden can seat 20,000 people for a concert. This blog was viewed about 62,000 times in 2015. If it were a concert at Madison Square Garden, it would take about 3 sold-out performances for that many people to see it. Click here to see the complete report.
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Not all cancers are black, white, blue, pink – some are very grey

Not all cancers are black, white, blue, pink – some are very grey

General
Over the last few months, I've seen quite a few posts entitled "Not all Cancer is pink".  I suspect it's a reference to the ubiquitous publicity that many women's cancer related advocates, bloggers and organisations attract. Those who use this phrase are perhaps concerned there is an imbalance and inherent unfairness in the distribution of support and are frustrated that their own cancer does not fare as well publicly? I share that frustration, however, I take my hat off to the battalions of advocates, bloggers and organisations who work very hard for breast and the various gyneacological cancers whether they push pink or not (and for the record, they don't all push or even agree with the 'pink' thing). I've even seen this term used within my own community - 'Not all cancer is pink, some…
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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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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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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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Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century

Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
OPINION The build up to NET Cancer Day has begun and I can hear hoofbeats becoming louder every day.  Is it a horse, is it a zebra etc etc.  However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more likely be taken seriously and attract new audiences? For those unaware, the term 'Zebra' is a North American medical slang for arriving at an 'exotic' medical diagnosis when a more commonplace explanation is more likely.  The original context of the term was to correctly indicate that the most obvious diagnosis of symptoms is normally correct - i.e. hoofbeats is almost always the sound of a horse. "When you hear hoofbeats,…
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Screw that diagnosis and get on with it!

General
  [caption id="attachment_3902" align="alignleft" width="300"] Screw that diagnosis and get on with it![/caption] Every now and then I see a positive story during my travels around the internet.  When I saw this one from K**** in Pennsylvania, I had to share.  If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43.  I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things get in the way and can get bumpy - cancer, being one of them (and a now, 16yo…
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Neuroendocrine…..the little suckers get everywhere!

Awareness, Technical NETs
One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan. The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message); and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'.  The response was amazing and on twitter it was one of Macmillan's most retweeted posts over that period.  The Macmillan Facebook post was also very popular and still rising with over 500 likes and over 40 shares so far. There are some great comments on the post and the one which…
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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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I’m still here

I’m still here

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
NINE years ago. 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 various 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 most likely handle it their own way - and that's perfectly understandable. The…
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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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Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Technical NETs
Background Although initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of  Neuroendocrine Neoplasms (NENs) has increased exponentially over the last 4 decades and they are as common as Myeloma, Testicular Cancer, and Hodgkin's Lymphoma. In terms of prevalence, NENs represent the second most common gastrointestinal malignancy after colorectal cancer. Consequently, many experts are now claiming NENs are not rare (see below). A recent study published on 5 Dec 2018 reports that even if you isolate Small Intestine NETs in the USA population, the incidence rate is 9/100,000. Contrast this against the US incidence rate as at 2012 of 7/100,000 for all NETs.  The rare threshold in Europe is 5/100,000 and below.  They're not common (in incidence rate terms which means the numbers diagnosed each…
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Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and Nutrition, Living with Neuroendocrine Cancer
Always speak to your specialist before taking vitamin and mineral supplements Featuring Tara Whyand. Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I'm happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed. This is one of the key reasons I believe there is a gap in specialist follow on support for Neuroendocrine Cancer patients - at least in the UK. As I said in my article 'I may be stable but I still need…
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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 Forums: frighteningly good or good at frightening?

Neuroendocrine Cancer Forums: frighteningly good or good at frightening?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient!  So I left it. Joining Forums In 2013, I joined several large Facebook closed groups which function as forums. After 4 years, I felt more experienced and knowledgeable and I wanted to learn more about the disease to help with my blog activity. Be prepared!…
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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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