Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don't believe the hype - 10 myths

 

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There’s a lot of inaccurate and out of date information out there.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 trueBy 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 reinforced in the 2017 update to include clarification for other endocrine organ types of NET including Pheochromocytoma. Read more here.  The word ‘Carcinoid’ is inextricably linked with this issue – read here why we need to stop using the term to help fight the benign myth.

Kunz His belief these tumors did not metastisize

Myth 2:  Neuroendocrine Tumours is a terminal condition

Not true.  By any definition of the word terminal in a medical diagnostic context, most NET patients have a good prognostic outlook, even those with metastatic and incurable variants of the disease. Read more here.

being_there_front
Graphic courtesy of Ellie McDowell

Myth 3: Carcinoid is another word for Neuroendocrine Tumours 

Not true.  Carcinoid is a very old term and was phased out years ago.  Carcinoid is not mentioned in the latest WHO Classification schemes for Neuroendocrine Neoplasms (a term covering Neuroendocrine Tumours and Neuroendocrine Carcinoma). Unfortunately, the problem is exacerbated by organisations and individuals who still use the word.  Also, those who use the following terms:

  • “Carcinoid Neuroendocrine”,
  • “Neuroendocrine Carcinoid”,
  • “Carcinoid and Neuroendocrine”,
  • “Neuroendocrine and Carcinoid”,
  • “Carcinoid NETs” or “CNET”

These are all contextually incorrect and misleading terms (not to mention the bad grammar). ENETS, NANETS and NCCN publications are gradually phasing the word out except in relation to Carcinoid Syndrome (and even then there could be easy solutions for this). Read more here and here.

carcinoid vs neuroendocrine

Myth 4:  All NET patients get ‘carcinoid syndrome’

Not true.  Firstly, many NET cancers are non-functional; and secondly, carcinoid syndrome is only one of a number of “NET Syndromes” associated with the various types of NET. However, the issue is further confused by those who use the word ‘Carcinoid‘ to incorrectly refer to all NETs and use Carcinoid Syndrome to refer to all NET Syndromes.  Read more here.

Early signs of a late diagnosis (2)

Myth 5:  Neuroendocrine Neolasms are rare

Not true.  As a collective grouping of cancers, this is no longer accurate. Read more here.  Also check out my post about the “Invisible NET Patient Population“.

Yao not rare

Myth 6:  Steve Jobs had Pancreatic Cancer

Not true.  Steve Jobs had a Neuroendocrine Tumour of the Pancreas.  Ditto for a few other famous names. Read more here.

steve jobs 2010
The last few years have reminded me that life is fragile

Myth 7:  I’m not getting chemotherapy, I must be doing OK?

Not true.  For some cancers or some sub-types of cancers, although it remains an option, chemotherapy is not particularly effective, e.g. some types of Neuroendocrine Cancer (NETs). In general, well differentiated NETs do not normally show a high degree of sensitivity to chemotherapy, although some primary locations fare better than others. However, many of the treatments for NET Cancer are somewhat harsh, have long-term consequences, and have no visible effects. NET patients are often said to “look well” but that doesn’t mean they are not struggling behind the scenes or under the surface.  Read more here.  P.S. Afinitor (Everolimus), Sutent (Sunitinib) are not chemo – Read more here.

chemotherapy-hand-and-arm

Myth 8:  All diarrhea is caused by carcinoid syndrome

Not true.  It could be one of the other syndromes or tumor types or a side effect of your treatment.  Check out this post.

NETCancer Diarrhea Jigsaw

Myth 9:  Neuroendocrine Tumours is a ‘good cancer’

Not true.  Simply, no cancer is good.  Some are statistically worse than others in prognostic terms, that’s true…… but living with NETs is very often not a walk in the park. However, no one cancer is better to get than any other – they’re all bad.  Read more here.

Good-Bad

Myth 10:  Every NET Patient was misdiagnosed for years

Not true.  Many NET Patients are correctly diagnosed early on in their investigation and in a reasonable time.  This myth is perpetuated because of two things: firstly, on forums, the ratio of long-term misdiagnosis is high creating a false perception; and secondly, the method of capturing patient surveys is not extensive enough – again creating a false perception.  In fact, the latest and largest database analysis from US indicates earlier diagnosis is improving, with more and more NETs being picked up at an early stage. Read more here.

if your doctors dont suspect something

Myth 11:  Somatostatin Analogues are a type of Chemotherapy

Not true.  Somatostatin Analogues (e.g. Octreotide and Lanreotide) are not chemotherapy, they are hormone inhibiting drugs.  They are more biotherapy. As the drugs latch onto somatostatin receptors, they are more targeted than systemic. For the record, Everolimus (Afinitor) and Sunitinib (Sutent) are not chemotherapy either. Read more here.

chemo-or-not-chemo

Myth 12:  Stuart Scott (ESPN) and Audrey Hepburn had Neuroendocrine Cancer. 

Not true. This is a common misunderstanding within the community.  They both had Pseudomyxoma Peritonei (PMP).  Read more about PMP here.

 

 

 

Myth 13:  I’ve been diagnosed with Neuroendocrine Tumours – my life is over

Not true.  Many patients live a very long time and lead fairly normal lives with the right treatment and support. It’s difficult but I try not to use ‘I can’t’ too much. Read more here.

I CAN

Myth 14:  There are only a handful of Neuroendocrine specialists in the world

Not true.  There are many specialists in many countries. Get links to specialists by clicking here

find net specilaist and 10 qeusitons

 

Myth 15:  The Ga68 PET scan is replacing the CT and MRI scan in routine surveillance for all NET Patients

Not true.  It is actually replacing the Octreotide Scan for particular purposes,  or will eventually.  Read more by clicking here.

PET-CT-Scanner

Myth 16:  All NET Patients are Zebras

Not true.  They are in fact human beings and we should treat them as such. Please don’t call me a zebra, I and many others don’t appreciate it. Please don’t use the term on my social media sites, the comment or post will be removed.  Sorry but I refuse to perpetuate this outdated dogma. Read why here:

hoofbeats

Myth 17: Multiple Endocrine Neoplasia (MEN) is a type of Neuroendocrine Tumour

Not true. Multiple Endocrine Neoplasia are syndromes and inherited disorders not tumours.  You can actually have MEN and not have any tumours.  However, these disorders can put people at more risk of developing Neuroendocrine or Endocrine Tumours. Read more here

genetics

Myth 18: Palliative Care means end of life or hospice care  

Not true. Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. A multidisciplinary care team aims to improve quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of disease. Read more here

The P word

Myth 19: Serotonin is found in foods

Not true. Serotonin is manufactured in the body. Read more here

brain-neurotransmitter-serotonin

Myth 20: NETs cannot be cured

Not true. If caught early enough, some NETs can be treated with curative intent (totally resected with margins) with little or no further follow up.  It says this in ENETS and NANETS publications which are authored by our top specialists. If we can’t believe them, who can we believe? Read more here.

cure quote

Myth 21: Pancreatic Enzyme Replacement Therapy (Creon etc) is only for pancreatic patients

Not true. It’s for any patient who is exhibiting exocrine pancreatic insufficiency. Read more here.

PERT

 

Myth 22: High Grade NETs are Carcinomas

Not entirely true.  Grade 3 (high grade) comprises well differentiated tumours and poorly differentiated tumours.  Only poorly differentiated tumour are carcinomas. Read more here.

High Grade

More to follow no doubt

For general cancer myths and the dangers of fake health news, please see my ARTICLE HERE

Thanks for reading

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

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Most Popular Posts

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

wego blog 2018 winner

Let’s talk about living with NETs

being_there_front
Graphic courtesy of Ellie McDowell

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 to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)
  6. Learn how to conquer your fear – click here

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living

Thanks for reading

Ronny – diagnosed 2010 and still a newbie

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Don’t worry, I really am OK!

dont-worry-im-ok
I really am OK!

I read an interesting article in the BBC entitled “Why people keep quiet about their battle with cancer”.  The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here:

  1. Talking about Cancer

  2. Managing your illness

Firstly as I have an international audience, I thought I’d introduce what might not be a well-known British trait – the ‘stiff upper lip’.  For the uninitiated, I’m defining this as “One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence.”  That perfectly explains the accompanying graphic!  That definition also covers the two key themes above, talking about it and managing the illness.

There appears to be a lessening of this way of thinking in the past 30 or so years. However, I think this trait remains prevalent, particularly (but not exclusively) in the more senior citizens. I’m not convinced that a stiff upper lip is something confined to the UK as I learn how some of my overseas friends cope. I also think it might be more prevalent in men, you just need to look at the gender split on cancer forums to see that.

As someone with a cancer blog which has fielded a quarter of a million views, I can hardly be accused of keeping quiet about my cancer (edit: now nearly a million).  However, that is a relatively new thing since diagnosis in 2010. Following that diagnosis, I kept my cancer ‘secret’ to close family, a few selected friends and only those at work who actually needed to know for administrative purposes. As I said in my blog “Sorry I’m out of service”,  …..the image of ‘invincibility’ was important to me at that time and I thought I could deal with it and still have the same ‘look and feel’ in my life as I had before. Someone suggested that I should go home one day and my response was “the only way I’m leaving this building early is in an ambulance. Foolish? Absolutely (but in hindsight of course!).  It eventually became impossible to find the same ‘look and feel’ and it took me 3 years to come out of my cancer closet.

I suppose people have such varying personal circumstances and different characters will deal with managing their illness in different ways. Some rely totally on their medical team (I get this but I wouldn’t rely 100% on this strategy).  Some rely on support groups. For example, take patient forums where there is a broad range of patient engagement types. Some people talk a lot about their issues, every cough, sneeze and ache is a worry. I suspect they are simply looking for support or they might be frightened and worried about a particular problem. Perhaps some are more reserved or they already have enough support elsewhere. Maybe they simply get some support by reading about the experiences of others with the knowledge they have that safety net if they felt they ever needed to ask a question. Of course, when you compare the ‘guesstimate’ of NET patients vs online patient forum numbers, the vast majority of NET patients are not on a forum. Interestingly, I have many people following my blog on Facebook, twitter and WordPress, who are not on any forum – in some ways, this might be a good option for some.  That said, I’d like to think my own group offers a good service.

I find myself managing my illness on a day to day basis.  I like to assess any issues carefully to avoid wasting other people’s time and generating unnecessary alarm and drama. But do I have a stiff upper lip?  Yes – I think I’ve always been like that and the ‘going home in an ambulance’ statement above confirms that.  However, I suspect I’m now more of a realist i.e. I’m aware of the signs, aware of the risks and I know there’s a possibility of me becoming ill in a short space of time. I need to avoid that. Sometimes I have a ‘battle’ with my ‘stiff upper lip’ but it’s normally a question of judgement and risk assessment.  Key questions I ask myself are: ‘Is what I’m experiencing normal’ and if so ‘it is dangerous’. If it’s not normal, ‘is it connected to NETs’ or ‘is it a regular illness’.  I’m also lucky to have a managed NET surveillance regime thanks to my local NET MDT and Centre of Excellence.

I remain alert but I won’t normally ‘suffer in silence’ for too long.  Please don’t either.

 

Tweeters – please retweet this tweet!

 

 

 

Carcinoid – What’s in a name?


The Other C word

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 term for all well differentiated tumours (NETs) and poorly differentiated carcinomas (NEC).  I’ll use NET going forward as that is where the confusion lies.

However, ‘Carcinoid’ seems to prevail in many parts of social media, advocate organisations, patients, even doctors are out of date. As a blogger and social media geek, I still use it as it’s a popular search phrase (although I’m always careful with context and in the correct ‘scenario’).  However and unfortunately, some still use it as a synonym for all NETs which is clearly incorrect. So called Carcinoid was ever only one type of NET albeit covering more than one location. I’m therefore baffled by the continued and frequent use of phrases such as “Carcinoid and Neuroendocrine Tumours” which misleadingly infers they are different cancers. Not helpful.

To prevent confusion, the use of the term NETs frequently needs to be expanded to distinguish between the different types. However, there does not appear to be any agreement on the naming conventions and I suspect this is probably one of the reasons why many people (including NET Specialists and advocate organisations) continue to use the term Carcinoid. I’ve seen sporadic use of the term SINET (small intestinal NET) and SB NET (small bowel NET) and we already have pNET (notice the syntax difference …..) and more recently I’ve seen ‘PanNET’.  I believe use of the anatomy has potential as a way forward but we need consistency.  Check out my article below entitled Carcinoid vs Neuroendocrine for advice on the correct terminology to use.

The primary NET is really important for context and understanding, thus why many patient advocate organsiation and cancer sites will still classify and list ‘Carcinoid’ as a single NET type rather than the long list of anatomical locations which can no longer be grouped under the heading of the Carcinoid type.  There are also many other factors involved and no solution seems to be perfect up to this point.  As for syndromes, there are several. So patients confused by the ‘instruction’ on the use of ‘Carcinoid’ will just say “I have the syndrome”. Just which one are they talking about? We also need to consider Carcinoid Heart Disease and Carcinoid Crisis and I have excellent suggestions for renaming both.

Another term I regularly see is ‘Noid’ – a truncation of Carcinoid.  Whilst I suspect that might have been popular and convenient 20 years ago, clearly it is not helpful when you consider the issues above.  Personally speaking, I find myself annoyed by being described as a Noid! Particularly when the ‘oid‘ part is what is causing the angst described above.  And while we’re at it, I’m also annoyed by being described as a zebra, that is another thing holding up our 21st century awareness campaigns.  Let’s move out of the 1980s please!

Some might say all of the above is just semantics and it’s nothing to get too excited about.  However, I believe we need more coordinated awareness and more coordinated clout for Neuroendocrine disease.  We should at least be consistent with the nomenclature messages (amongst other things).

You’ll find updated thinking in my other post “Carcinoid vs Neuroendocrine”

Fortunately the big NET specialist organisations are slowly getting rid of the word ‘Carcinoid’ and this is long overdue.  It will take a while and patients can set the example for the doctors and medical writers.

carcinoid falling out of favor

Ignore this post about Neuroendocrine Cancer


ignore-this-post

When I was diagnosed, I wasn’t feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the ‘long game’ and will sometimes take years before it’s finally discovered.  It is very very very sneaky.

Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking – however, it will also try the physical route.

As it spreads, it can become noisier through growth but also by secreting excess amounts of hormones and other substances. It knows that tumour growth and these excess hormones and substances will mimic routine illnesses such as IBS, diarrhea, stool changes including steatorrhoea, stomach cramps and bloating, asthma, facial flushing, menopause, weight loss, anaemia, fatigue, tachycardia (fast heart beat), pain, and nausea – a real witch’s brew of symptoms. These may manifest themselves as common endocrine conditions e.g. it can mess with your blood sugar and thyroid levels.  These are a few examples, there can be many others – it’s a real witch’s brew of symptoms. Neuroendocrine Cancer thinks this is great because it fools doctors into misdiagnosing you with something else which means it can continue to grow undetected and unfettered, spreading further inside you.

If nothing is done to stop its relentless growth, it will eventually kill.

However, sometimes an inquisitive doctor or nurse upsets its progress by thinking ‘outside the box’. Neuroendocrine Cancer hates when people are aware of its devious nature and hates when people know which tests can be used to find it and which treatments are best to attack it. Inquisitive, proactive and determined patients can also add to this effect and sometimes a bit of luck is involved.

It doesn’t give up easy and tries to work around your treatment. It knows your treatment will come with certain consequences and it will try to exploit this situation by keeping you guessing between cancer activity and these consequences. It really hates observant medical staff and patients, particularly those who understand Neuroendocrine Cancer.

Unfortunately for Neuroendocrine Cancer, there is now more knowledge about its devious activities and the latest statistics indicate it’s starting to be caught earlier. Nonetheless, we cannot afford to become complacent.

Neuroendocrine Cancer hates awareness and it will be extremely happy if you don’t share this post.

Let’s attack Cancer metaphors

Let’s attack Cancer Metaphors

In the past 24 months, I’ve read dozens of articles on the subject of cancer metaphors and in particular their use in describing cancer experiences with the words ‘fight’, ‘battle’ and other ‘military’ sounding terms.  The authors say that perhaps this is not the best language to use.  One author used the term ‘violence’ to describe these type of metaphors.  A ridiculous misrepresentation of the metaphor in my opinion.

Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use.  I don’t like Cancer – it attacked me, it attacked my family, it attacked others I know, it has killed people I know……. it has killed millions of people and changed many lives. I’m ‘fighting’ Cancer.  I’m in a ‘battle’ with Cancer.

But I don’t mean all that in any ‘violent’ way……….  Dear trendy writers,  please stop misinterpreting what language people use for your own trendy populist purposes. 

One of the arguments used by these ‘trendy’ writers and newspaper authors against the use of what they perceive to be ‘military’ or ‘violence’ metaphors, is that people die of Cancer and therefore they are seen to have ‘lost’ their battle or fight. Clearly, it’s sad when anyone dies of any illness.

We all die at some point, ‘life’ eventually kills us. Yet, few people are reported to have lost their fight with life. So why focus this “fight” debate on cancer?

I have access to ‘reinforcements’ and ‘allies’; and their ‘weapons’ in my battle with cancer.  There are many options including surgical strikes with invasive and minimally invasive forays. The use of WMTD (weapons of mass tumour destruction) is authorised if applicable, i. e. I have chemical and nuclear options. Using these ‘weapons’ and deploying them both strategically and tactically, I can put up the best fight possible and by adjusting the disposition of my ‘forces’ when required, I can delay the advance of the ‘enemy’, protect my flanks and force it to change its course or retreat.

Not happy with infiltrating your body, Cancer also wants to take advantage of your fragile state by playing with your mind. It does this by creating the illusion of an uncertain future, makes you worry about your family and makes your family and friends worry about you. I’ve therefore also deployed a psychological warfare capability to counter this threat. It’s a weapon known as ‘a positive mindset’.

If it finally gets me, I know I’ll have tried my best and I will go down fighting hoping to be mentioned in despatches. I certainly do not see this as a defeat and anyone who knows me will not think that either.  I know that others will carry on the ‘fight’ in my absence until Cancer is defeated (and it will be defeated).

Just my approach, please don’t take offence as none is intended.

I believe people quite naturally ‘fight’ in their own way and there are even parts of the human anatomy whose job it is to fight illness and infection without us even realising they are doing it. So whether we like it or not, our bodies are fighting illnesses and we cannot stop them doing it. It’s natural.

In fact, to ‘fight’ has many contexts and not just the contrived ones used to argue against use of these metaphors. If you check the Oxford/Cambridge dictionaries (the Supreme Headquarters of the English language), you will see that ‘fight’ has numerous meanings including “to struggle to overcome, eliminate or prevent” or “to strive to achieve or do something”. What that means is that some people will use the word fight to describe the ability to get out of bed in the morning, to walk to the local shops, to go to a restaurant for a meal. Fighting to see a doctor who understands their cancer, fighting for access to the best treatment, fighting when you think someone isn’t listening. I fight cancer by writing a blog. The context is really important.

As for me, I have no intention of ceasing the use of words such as ‘fight’ and ‘battle’ in my war of words with Cancer.  It’s my way of coping.

I’m loving this article – Cancer Ninja

Read this post to know why – WHY I FIGHT

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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