The 5 E’s of my daytrip

The 5 E’s of my daytrip

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here. I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip last week. Exercise Everywhere you look, there are experts telling us that exercise is good for us, even those with cancer can benefit. There's even programmes being introduced…
Read More
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,…
Read More
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', they have real difficultly understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it! 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 through 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, in addition to creating a disadvantage of awareness opportunities because of the use of incorrect cancer types, clearly many doctors and…
Read More
Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

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

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition for almost 8 years and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine. So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable! Take a break if you need one. Thanks for reading Ronny…
Read More
Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
From other posts, you'll be aware of the thyroid lesion (now 17x19mm) which I've been tracking since 2013. The surveillance has included routine thyroid blood tests, mainly TSH, T3 and 4. Due to trends in TSH and T4, it's been suggested I'm borderline hypothyroidism. I'm out of range in TSH (elevated) but the T4 is currently at the lower end of the normal range.  On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism. Levothyroxine is essentially a thyroid hormone (thyroxine) replacement.  One month after taking these drugs, my thyroid blood levels are now normal for the first time in 4 years (since there are records of test results - it might…
Read More
Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

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

Neuroendocrine Cancer – normally slow but always sneaky?

Awareness, Patient Advocacy
  There's a lot of scary diseases in this world but some of them are particularly spooky.  One such spooky disease is the lesser known type of cancer that infiltrated my body - Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short).  Not only is it scary and spooky, but it's also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you. It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen.  Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems.  It wants to establish…
Read More
Neuroendocrine Neoplasms – Can they be cured?

Neuroendocrine Neoplasms – Can they be cured?

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

Ever wonder what caused your NET?

Living with Neuroendocrine Cancer, Survivorship, Technical NETs
OPINION.  When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament. In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility.  We all react differently but in general terms our experiences can be categorised into 3 main areas: initial reaction, distress and then adjustment. Initially, I was frustrated…
Read More
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…
Read More
Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Opinion: Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on.  Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement. Stabilised Following diagnosis, I got quite a lot of attention in…
Read More
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…
Read More
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…
Read More
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…
Read More
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

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

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

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

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
OPINION.  Date of Article March 2017.  In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including  immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them; and at the requisite time. This alone is…
Read More
Poker Face or Cancer Card?

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption]   Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age,…
Read More
It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

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

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

Things not to say to someone with cancer

Inspiration, Survivorship
[caption id="attachment_9184" align="aligncenter" width="592"] Graphics courtesy of https://emilymcdowell.com/[/caption] This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere!  Personally, I don't tend to get too excited about it, although there can be extremes.  Most people (not all) are just stumped to know exactly what to say.  Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never met, you don't know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator,…
Read More
Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

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

Road ahead closed – Bowel Obstructions

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

Neuroendocrine Cancer: Nodes, Nodules, Lesions

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

Keep your light burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that you can pick up where you left off 30 years ago as if it was only yesterday and 'bravado' is not only allowed, it's expected! A week later, I received a very nice Christmas card with a message which included "...... the old light is still burning brightly".  It was a metaphor but something I needed to hear. Neuroendocrine Cancer can damage or take our body parts, cause us pain and discomfort, disrupt our lives through constant treatment and surveillance, giving…
Read More
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…
Read More
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.…
Read More
“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…
Read More
Living with NETs – a patients included award winning site

Living with NETs – a patients included award winning site

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

Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_6724" align="aligncenter" width="2896"] Medicine![/caption] "yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we? For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "we must do this one day......." I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500" campaign which fortunately and timely sparked us into gear. As a patient with incurable cancer, life can be tough on the body and mind. However,…
Read More
Not every illness is visible

Not every illness is visible

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

Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
  Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer.  In the previous parts of this series I focussed on the following: Article 1 - Vitamin and Mineral Challenges.   This was co-authored by Tara Whyand, UK's most experienced NET Specialist Dietician.  This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario. Article 2 - Malabsorption.  Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand. Article 3 - 'Gut Health'.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as…
Read More

Exercise and Cancer: Forward is Forward

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

Let’s talk about living with NETs

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_4893" align="aligncenter" width="500"] Graphic courtesy of Ellie McDowell[/caption] There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don't know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post! I don't tend…
Read More

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…
Read More
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…
Read More
I Can

I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Opinion.  Most people with an incurable Cancer will go through both good and bad periods.  I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point.  I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". When I wrote my blog "Living with Neuroendocrine Cancer - it takes guts", that wasn't me being one of those trendy bloggers saying the sort of things people want to hear. Nor was my article "Neuroendocrine Cancer – is normally slow growing BUT ….." an attempt to invoke some sort of 'pity party'. Neither of those things are my style. Despite the metaphoric angle to the post…
Read More
Living with Neuroendocrine Cancer – it takes guts

Living with Neuroendocrine Cancer – it takes guts

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
The majority of Neuroendocrine Tumours (NETs) are slow-growing (well differentiated).  However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence.  Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments.  Moreover, in most cases, the appearance of a functional tumour normally indicates the disease has metastasized and could now be incurable. Some tumours will grow and metastasize without syndromes, i.e. they are non-functional. These may become functional at some point in the future. However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage IV.  In fact, NETs are one example where surgery at the metastatic stage can often provide prognostic advantages denied in other…
Read More

100,000 blog views – thank you!

Living with Neuroendocrine Cancer
NET Cancer Blog has just recorded 100,000 blog views. I'm extremely excited to have reached this major milestone. However, I'm also really grateful to my followers on this blog site, on Facebook, on Pinterest, on Google+ and on twitter for supporting me through thick and thin. Your engagement with my blog whether a simple 'like', a share, a comment, a pin, a tweet, a retweet, an email or via a private message; is not only extremely motivating but also very humbling. Thank you so much for giving NET Cancer 100,000 pokes in the eye! Onwards and upwards to 200,000! Ronny I’m also active on Facebook.  Like my page for even more news. Disclaimer My Diagnosis and Treatment History Most Popular Posts
Read More
I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…
Read More
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…
Read More
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…
Read More

Patient power – use it!

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

Sometimes you just gotta climb that hill!

Inspiration, Living with Neuroendocrine Cancer
It was wet, windy and very cold and that was at the bottom of the hill I'm looking up at. It wasn't a terribly big hill but I knew it would need considerable effort and perhaps some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we almost simultaneously said "do we really want to go up that in this weather?"  Oh yes ....... no pain, no gain! So we went up the hill and it hurt. Up there, it was wetter, windier and colder! However, the 'euphoric high' was worth it.  It was like medicine healing the body and mind. The 'euphoric high' is kicking in! Whatever your 'hill' is, two of the common elements required to 'climb it' are motivation and…
Read More
“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…
Read More
Neuroendocrine Cancer – Incurable is not untreatable

Neuroendocrine Cancer – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist said " ... perhaps just months".  That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife Chris heard it all and I was refocused.  "OK Doc - let's go" I said.  Always take someone with you to take notes at important meetings with Oncologists! I continue to see…
Read More
Alcohol – the NET Effect

Alcohol – the NET Effect

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

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.
Read More

Neuroendocrine Cancer – a Doctor’s experience

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

Lanreotide – it’s calling the shots!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
  Please note a new syringe for Lanreotide will be available in 2019, at least in Ireland and UK which have confirmed dates (UK is end of June rollout begins).  However, Ipsen are committed to roll it out to the rest of Europe, US, Canada, Australia and New Zealand by end of 2019 (details to follow) following necessary regulatory approvals.  See photos below.  Further information will be communicated to healthcare professionals in advance of this, to enable them to inform their patients, whom have been prescribed Lanreotide. In addition, the patient information leaflet included in the packet will have clear instructions for use. There will be a prominent yellow box located on the outer carton of the medicine, alerting healthcare professionals and patients that a new syringe is contained inside.…
Read More
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…
Read More
My Neuroendocrine Cancer Surgery – patient experience (part 1)

My Neuroendocrine Cancer Surgery – patient experience (part 1)

Survivorship, Treatment
8th - 26th November 2010 Memories of my 18 day stay in hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NETs is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients. Prior to being…
Read More
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…
Read More
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…
Read More
Scanxiety – I just don’t get it!

Scanxiety – I just don’t get it!

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