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Don’t believe the hype – 10 Neuroendocrine Cancer Myths debunked


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)’.  Furthermore, The World Health Organisation (WHO) 2010 classification 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.  Read more here.

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 incurable disease. Read more here.

Myth 3:  Every NET patient has ‘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.  An example from ENETS indicates that Small Intestinal NETs (SiNETs) have a 30% prevalence of ‘Carcinoid Syndrome’ in those with metastatic disease. However, the issue is further confused by those who use the word ‘Carcinoid‘ to incorrectly refer to all  Neuroendocrine Tumours.  Read more here.

Myth 4:  Neuroendocrine Tumours are rare

Not true.  As a collective grouping of cancers, this is no longer accurate. Read more here.

Myth 5:  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.

Myth 6:  I’m not getting chemotherapy, I must be doing OK?

Not true.  For some cancers or some sub-types of cancers, chemotherapy is not particularly effective, e.g. some types of Neuroendocrine Cancer (NETs). In general, well differentiated NETs do not show a high degree of sensitivity to chemotherapy.  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.

Myth 7:  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.  However, no one cancer is better to get than any other – they’re all bad.  Read more here.

Myth 8:  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.  Read more here.

Myth 9:  Somatostatin Analogues are a type of Chemotherapy

Not true.  Somatostatin Analogues (e.g. Octreotide and Lanreotide) are not chemotherapy, they are hormone inhibiting drugs (or hormone therapy). For tbe record, Everolimus (Afinitor) and Sunitinib (Sutent) are not chemotherapy either. Read more here.

Myth 10:  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.

Thanks for reading

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

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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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There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient


Thousand of people are diagnosed with cancer every day.  Neuroendocrine Cancer now forms an increasing number of these diagnoses thanks to greater awareness, better diagnostic tools and more accurate reporting systems, including the ability to get the correct cancer type into the statistics.  However, although numbers are on the increase, it doesn’t necessarily directly relate to a better diagnostic experience – that is clear from the third reason I outlined above. Many people are still diagnosed too late.

To determine a cancer, that means getting tested and tests are normally based on the presenting symptoms. Certain cancers have very distinguishing symptoms and can in most cases, be correctly referred to an appropriate test, specialist or hospital. Tick!

The problem with certain cancer symptoms is that they are not always clear cut.  For example, take symptoms such as abdominal pain, diarrhea, weight loss, or fatigue – those can be caused by a whole host of things, many of which aren’t even cancer. It’s difficult for any doctor to work out the cause of such things let alone which tests to send them for – they can be really difficult boxes to tick. Worrying they can also be really easy boxes to tick for illnesses such as IBS, indigestion, menopause.

Neuroendocrine Tumours or NETs for short, is one of a number of ‘hard to detect’ cancers because many patients present with one or more of these vague symptoms.  It’s also one of the reasons why they are normally found at secondary care institutions and perhaps after several visits to a physician involving journeys back and forth between primary and secondary care before the diagnosis was finally made.  In the UK, it’s staggering to note that almost a quarter of all cancer diagnoses are made in an ’emergency scenario’, frequently when it’s too late to cure.

So what can be done to improve the diagnoses of ‘hard to detect’ cancers such as NETs? I don’t have any real answers for you although I have postulated a number of times about where we might focus in terms of education (more on this in later blogs).

I’m fairly certain that medical science will come along with novel ways of helping but that is somewhat downstream.  If only a referral to a specialist could actually be a referral to a team of different but highly coordinated specialists – a bit like a Multi Disciplinary Team (like a ‘Tumor Board’) but operating at the pre-diagnostic phase with quick access to all the regular diagnostic tools without any further referrals. That would surely help cut down some of the ‘ping-pong’ visits between primary and secondary care and a team of experts is more likely to ‘think outside the box’ than a single specialist who is focused only his or her ‘speciality’.

I was therefore very interested to read about a pilot programme currently underway in UK whereby a number of ‘early diagnosis’ projects are running.  The initiative is known as Accelerate, Coordinate, Evaluate (ACE) Programme.  Of particular interest to NETs and other hard to detect cancers is ‘Wave 2’ of the programme where someone with ‘vague’ symptoms is referred to a “Multi-Disciplinary Centre (MDC) rather than to a specialist in their local hospital.  And I thought ……what a great idea!  I’ll be monitoring this programme to see the outcomes which are expected at the end of 2018.

In the meantime, if you see someone ticking a box, make sure you know which box is being ticked and challenge it if necessary

Thanks for reading

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

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!

community_titled_transparent_2013-10-22

 

 

 

NETwork with Ronny © – Newsletter March 2017


 

Hi NETworkers!

Welcome to my fifth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community.

with Grace Goldstein from Carcinoid Cancer Foundation

March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don’t have an issue with private contact but please note my disclaimer. My winter cold extended into March including during the ENETS/INCA symposium and although I had no voice, I still managed a question to the panel.

Despite a low number of blogs, I still managed to accumulate the second biggest monthly blog views ever. Thank you all so much 

New Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Other News in Mar 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  I almost doubled the amount of subscribers in March! Currently 168.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Blog Milestone.  In March, I tipped over the quarter of a million views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

Where did March Blog views come from? – Top 11 countries:  Denmark is a new entry.

 

 

For interest. the 10 Ten Facebook followers by Country – Spain overtakes France 🙂

Thanks for your great support in March.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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