20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up.  To be honest, the first few days I was suffering a lot of fatigue and brain fog from the morphine/painkillers. The thought of posting stuff on Facebook was far from my thoughts.  I was receiving…
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In the land of small tumours, there is still a lot of work to do!

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials, Patient Advocacy, Treatment
I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1).  He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors".  He quotes from a 1987 article written by Dr Charles Moertel entitled "An Odyssey in the Land of Small Tumors" and I suspect he selected this article from Dr Moertel as he too writes…
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The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global pandemic and all that follows and it's throwing fuel on those fires. The COVID-19 pandemic has added another layer of complexity to the fears of NET patients. Inability to travel,…
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Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
Opinion PostI've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer".  The answer is almost impossible.  Here are a few of the reasons why these things get muddled:1. Not everyone has access to a NET specialist, let alone a Dietitian who specialises in NET. So, they come to patient groups to ask about a very 'heterogeneous' group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options. 2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with…
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Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials, Patient Advocacy, Survivorship, Treatment
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes!  Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.Neuroendocrine Tumor Pathogenesis…
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UK Travel Insurance – please give cancer patients a break!

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Updated and reviewed 10th June 2022OPINION.FOR UK NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients.  One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned.  This is based entirely on my own experience and decisions.  I also declare no interest in any of the companies listed, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company.  I do this to try to help others.   I first started supporting this issue via Macmillan in 2017 but they have…
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I thought I was going to die.  I didn’t

I thought I was going to die. I didn’t

Inspiration, Patient Advocacy, Survivorship
I thought I was going to die, I didn't Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger person. It's known that the lower grades of Neuroendocrine Tumours (NETs) have fairly good outlooks but there are still many factors…
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Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In my patient support group of 7000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers.  I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day.  In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for quite a while leading up to the diagnosis.  That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…
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Let’s Talk About NETs (#LetsTalkAboutNETs)

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Caption: Talking to Ipsen 2016 I do a lot of writing about NETs but I guess I've also done some talking too.  Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings.  Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides.  Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal.  I will keep adding them so they're all in one place.  Published talks Ann Edgar Trust - 31st August 2022 I was invited by Gordon Mackay who runs patient meetings for the Scottish NET organisation known as the Ann Edgar Trust.  As usual, I was only too happy to help. …
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11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship
I finally made 11 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility.  I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit.  It was incurable.  And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction in the general area of the mesentery and in the…
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Every picture tells a story (point, click, read)

Every picture tells a story (point, click, read)

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…
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A person with Neuroendocrine Cancer fell into a hole and couldn’t get out……….

A person with Neuroendocrine Cancer fell into a hole and couldn’t get out……….

Inspiration, Patient Advocacy
A person with Neuroendocrine Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still and filled the bucket.A healthcare professional walked by. The person called, “Help! I can’t get out!” so the healthcare professional gave the person some drugs and said, "Take this it…
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The 6 E’s

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship
An opinion postWhen I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings (‘Emotions’) at work would make me flush though! As for ‘Eating’ – well that’s another couple of blog’s worth! Worth…
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Neuroendocrine Cancer: Follow up tests and checks

Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET.  In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving…
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Currently trending on RonnyAllan.NET

Currently trending on RonnyAllan.NET

Patient Advocacy
I realise some of you are busy but if you wanted a quick catch up and summary of what's currently relevant on my site, you can bookmark this article and refer to it time and time again.  It will automatically update the top 10 list below which are the most read posts in the previous 48 hours on my site. To read an article just click on the title in the box belowThese views will have come from various sources of reading including my Facebook pages, Twitter, Pinterest, Wordpress, newsletters and in my private group.  I hope many of you will find this new tool useful.Thanks as usual for your phenomenal support. Ronny To read any article, just click on the title below Click here and answer all questions to join my private…
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The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy
Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data.  For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are recommended screening. Colorectal covers the large intestine including the sigmoid colon and rectal cases.   You can read this article from the National Institute of Health covering the issue in US. …
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Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials, Patient Advocacy
It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown.  I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here.  In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could have access to a new tool to be able to home in on a particular location.DNA methylation-based profiling is now routinely used in the diagnostic workup of brain tumors but…
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Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials, Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community.  This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this is a precise science, there are too many variables.  And while this article focusses on the clinical factors, there can of course be non-clinical factors in play in different countries…
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2 Million!

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million!  Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 2 million: whilst accumulating around 20,000 followers across all my social media…
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Serotonin – it’s a no-brainer!

Serotonin – it’s a no-brainer!

Patient Advocacy
OPINIONThere is constant discussion about the effects of serotonin-producing tumours and issues of depression, anxiety, and 'rage'. However, it's a really complex issue for laypeople and I have no intention of trying to resolve it in this article. However, it's clear to me from listening and reading these discussions in patient forums for many years, that most of the discussion appears to be based on years of unsubstantiated and unmoderated debate inside patient forums without professional input.  This is not an attempt to bash patient leaders and forum administrators, because a full understanding of these issues needs a much wider moderation. I've spent a considerable time researching and analysing what science is known and I can tell you now that the behaviour of serotonin in the human body is not…
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“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A lot had been written about Steve Jobs, some good, some bad, some inaccurate - the latter is mostly about the cancer he had.  I came across this clip published by an Apple Mac publication and it contained a video of Steve the day he returned to Apple after having a liver transplant and had recovered from the procedure.  In it he said "I'm vertical" in classic Jobs language and positive outlook.  Watch the clip here:https://youtu.be/BNv2lH225Ko The article is a good one except it falls for the usual trap - that he had Pancreatic Cancer.  I made a comment of course - you might like to too.   It's probably too…
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1.4 million thanks!

1.4 million thanks!

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just registered the 1,400,000th view of my blog site.  So grateful for the support!Last 12 posts going back to 28th June - feel free to read and share.  Each one has a share button for Facebook, Twitter, Pinterest, WhatsApp and Email (as has the entire post).You can also catch up on other points of interest and some of my lockdown activities on my Facebook pages Ronny Allan and Neuroendocrine CancerMany thanksRonny
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Small intestine, large surgery

Small intestine, large surgery

Patient Advocacy, Treatment
My own experienceAt my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi-disciplinary team was set up, but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out that surgery is not normally offered in cancer at Stage 4 but the slow-growing nature of most NETs allows for some leeway here.  Statistics indicate that around 50% of SI NET present as metastatic cases, I'd like…
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Paraneoplastic endocrine syndromes – the NET effect

Paraneoplastic endocrine syndromes – the NET effect

Patient Advocacy, Survivorship
Kaltsas, G., Androulakis, I., de Herder, W., & Grossman, A. (2010). Paraneoplastic syndromes secondary to neuroendocrine tumours, Endocrine-Related Cancer, 17(3), R173-R193. Retrieved Jul 28, 2020, from https://erc.bioscientifica.com/view/journals/erc/17/3/R173.xml Neuroendocrine Tumours (NET)Paraneoplastic syndromes are a group of rare disorders that are triggered by an abnormal immune system response to a cancerous tumour known as a "neoplasm." Paraneoplastic syndromes are thought to happen when cancer-fighting antibodies or white blood cells (known as T cells) mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older people and are most common in individuals with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to the tumor being discovered. These symptoms may include difficulty in walking or swallowing, loss…
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The NETest® – a Chromogranin A replacement and more?

The NETest® – a Chromogranin A replacement and more?

Clinical Trials, Patient Advocacy
Tumour Markers GeneralFor some years the gold standard tumour marker for Neuroendocrine Neoplasms (NENs) has been and remains today, Chromogranin A (and for certain scenarios Chromogranin B and C can provide some additional clues).  Pancreastatin, which is actually a molecule of Chromogranin A, is another marker touted but appears to be limited to USA. Its main advantage is the ability to better handle the effects of Proton Pump Inhibitor (PPI) use which is prevalent in the general population.  As we move to a new era of molecular/genetic tumour markers, there's a danger that NENs will be left behind, stuck with diagnostic tools not capable of meeting new demands. I see a lot of public criticism of Chromogranin A, but it's mainly directed at the problem of being skewed by the use…
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My interview with ITM – I’m still here!

My interview with ITM – I’m still here!

Awareness, Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT).  The company is formally known as  ITM Isotopen Technologien München.One of their pipeline developments is 177Lu-Edotreotide / Solucin® in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET).  The development is via the COMPETE Phase III Clinical Trial which is being conducted worldwide in 11 countries at 33 sites and is open for recruitment.  I actually wrote about this trial after attending a workshop at the annual ENETS conference in 2018.I was delighted when they wanted to interview me to…
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My Self Isolation Diary – COVID-19

My Self Isolation Diary – COVID-19

Patient Advocacy
COVID-19 reminds me of some of the issues with Neuroendocrine Cancer e.g. is this a normal day to day cold/flu/chest issue or is it COVID-19?  At least COVID-19 is the number one awareness topic in the universe, so people are very very aware.  Just as well because it has the potential to kill hundreds of thousands, perhaps millions of people.  It's only right that cancer patients take strict precautions because they should all at least be considered as an 'at risk' category, and many will be on their national 'most vulnerable' lists.So, when I started to cough and wheeze on Tuesday 17th March 2020, I was clearly concerned. On 19th March, I started to record my self isolation with daily posts on Facebook containing a mix of humour, happy times…
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COVID-19 and Cancer Treatment and Surveillance

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, Treatment
This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance. NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or stopped in NET?Surgery: Can/should surgery be canceled or delayed?Liver-directed therapy: Should liver embolization be performed? Is one modality preferable to another in the context of the COVID-19 outbreak?Lutetium Lu177 DOTATATE…
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Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship
OPINION. I guess many people are feeling pretty scared right now.  Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news.  I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal.  We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep.  I don't know about you but I would hate to have survived metastatic Cancer for the last 10 years only be taken out by a stupid tiny virus because I forgot to wash my hands. Thus why I intend…
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Coronavirus 19 (COVID-19): risks for cancer patients

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship
This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.UPDATED 28 Mar 2020 - see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general summary of the effects of treatment in regard risk,…
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Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment, and my follow up and support from a specialist centre were in place. I cope, but I wouldn’t say it’s easy living with…
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Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Inspiration, Patient Advocacy
This story is about my friend Kirsty. She lives with metastatic Pheochromocytoma, a type of Neuroendocrine Tumour (NET) of the adrenal glands - (read more here). She has an amazing blog that is not just for Pheochromocytomas or even just for Neuroendocrine Cancer patients and supporters because she has not let her condition stop her from doing normal and amazing stuff. The challenges she has faced and still facing, are very similar to many cancer patients. Kirsty is actually one of the moderators in my private Facebook group, she found me and put herself forward to help out. My group international in composition working 24/7, so her location in New Zealand was perfect, filling in the North America/Europe normal 'sleepy' time around 3am - 7am UK time.In 2012, Kirsty moved…
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Prognostics and Crystal Balls

Prognostics and Crystal Balls

Inspiration, Patient Advocacy
When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. 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!…
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“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again…
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The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship
An Opinion Post Edit:  September 2020.  I believe the flu shot is even more important in the era of COVID. This is an illness that typically spreads in autumn and winter. A major flu outbreak would not only overwhelm hospitals in the coming months (the so-called "twindemic") but also likely overwhelm a person who might contract both at once.Edit:  October 2021.  Ditto. Edit:  September 2022.  Ditto. Another year, another flu shot. Since my cancer diagnosis, I've had one each year. To me it's really important protection even though I know it's not 100% effective, it's better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my susceptibility to chest infections and flu may be dangerous for me, and having got this far beyond diagnosis, with an…
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The trouble with the NET (Part 4) – Cancer can kill but so can fake cures

The trouble with the NET (Part 4) – Cancer can kill but so can fake cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer.  If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product.I was also interested to read a number of articles about various aspects of this modern phenomenon.  Firstly, in the magazine Wired, a major media company was forced to take down some cancer therapy videos after someone pointed out they were not scientifically factual.  Not just patients who get fooled by these claims then?Much of the misinformation arrives via Facebook, and YouTube, two of the most commonly used social media tools. This article suggests a shockingly large majority of…
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The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

Awareness, Patient Advocacy
Reviewed and updated 14th March 2022High Grade - the forgotten patient group?When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group.  Clearly all the aforementioned organisations support all patients regardless of grade, but it's true to say that the naming and general use of terminology continues to fall behind. It's also true that the term…
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I’m not sick, I just have cancer

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight,…
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Rosacea – the NET Effect

Rosacea – the NET Effect

Awareness, Patient Advocacy
Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on my chin. My nose is slightly discoloured and more reddish than the rest of my face since the issue started.  Shortly after I started experiencing this issue, a doctor diagnosed me…
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Neuroendocrine Cancer: No one gets it until they get it!

Neuroendocrine Cancer: No one gets it until they get it!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description. …
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From dying to living, to hell and back

From dying to living, to hell and back

Awareness, Inspiration, Patient Advocacy
I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was "The shock effect never wears off".  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases). This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as 'Patient E'. I just felt that someone somewhere might learn something…
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Neuroendocrine Cancer: a needle in a haystack?

Neuroendocrine Cancer: a needle in a haystack?

Patient Advocacy
Reviewed and edited 3rd May 2022It'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 and also in many other places), 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 may use the following terms in this post:Neuroendocrine Neoplasm (NENs) - a combination term for both well differentiated Neuroendocrine Tumours  (NETs) and Neuroendocrine Carcinomas (NECs)I wanted to cover two different aspects of the problem of finding NENs.…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I have a lot to be thankful for [caption id="attachment_24013" align="aligncenter" width="1024"] Click on the picture to read[/caption] Not intended to come over as a pity party No 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! [caption id="attachment_14152" align="aligncenter" width="640"] Click on the picture to read[/caption] 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 [caption id="attachment_3720" align="aligncenter" width="391"] Click on the picture to read[/caption] No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although…
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How to Talk to a Cancer Patient Without Being a Complete Twit

How to Talk to a Cancer Patient Without Being a Complete Twit

General, Humour, Living with Neuroendocrine Cancer, Patient Advocacy
I enjoyed reading "8 rules on how to talk to a cancer patient" because I think much of it is written with 'tongue in cheek'.  Great title! In UK we might even spell the word 'twit' slightly differently (UK people will get it!). Some of the rules are directed at doctors and I'm sure some doctors will laugh (if you're a doctor and you didn't laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a 'pity party' and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don't want pity.…
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Living with Cancer – Worrier or Warrior?

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers.  I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way.  I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing?  However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective. Warriors I used to do that for a living so…
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Neuroendocrine Cancer – Short Update from NANETS 2018

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting.  It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter, one can keep up to speed on what is or has been discussed.  One day, NANETS and ENETS will be sufficiently advanced that we can all watch the presentations from…
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Don’t worry, it’s benign!

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
OPINIONOne of the most controversial aspects of 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). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant.Any standard cancer nomenclature definition of the word 'tumour' will confirm the definition of the word tumour means it can either be benign or malignant. However, and while I'm sure there are benign NETs, the key statement to explain…
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Neuroendocrine Cancer: Diagnosing the Undiagnosed

Neuroendocrine Cancer: Diagnosing the Undiagnosed

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 many cases, people don't even 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 navigate.…
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Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine Type". Her death certificate quoted "Pancreatic Neuroendocrine Cancer". Despite this, the media outlet that published her death certificate still led the article with the headline "Pancreatic Cancer". Exactly the same thing happened with Steve Jobs and a few others. And that's only the ones we know about - how many other pe0ple are being labelled and documented with the wrong cancer type?I…
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I wish I had another cancer

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy
AN OPINION POSTI’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse than others (for example in prognostic terms), it seems like a race to the bottom as patients fight for the ‘top’ spot.  It works both ways as some people perceive they have…
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