- 352,464 hits
- The Invisible Neuroendocrine Tumor Patient Population August 14, 2017
- Lanreotide for Lung NETs – SPINET Trial August 8, 2017
- NETwork with Ronny © – Community Newsletter JULY 2017 August 1, 2017
- At home with Lanreotide July 13, 2017
- NETwork with Ronny © – Community Newsletter JUNE 2017 July 5, 2017
- Study of Pembrolizumab With Lanreotide Depot for Gastroenteropancreatic Neuroendocrine Tumors (PLANET) June 17, 2017
- Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness June 16, 2017
- Ronny Allan’s ‘PoNETry’ © – An Ode to Lanreotide June 13, 2017
- Living with Neuroendocrine Cancer – 6 tips for conquering fear June 8, 2017
- NETwork with Ronny © – Community Newsletter MAY 2017 June 1, 2017
- ASCO 2017 – Let’s talk about NETs #ASCO17 May 19, 2017
- Waiting on PRRT? ….. there’s light at the end of the tunnel May 8, 2017
- NETwork with Ronny © – Newsletter April 2017 May 2, 2017
- The trouble with the NET (Part 3) – miracle cures April 27, 2017
- Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor April 25, 2017
- Don’t believe the hype – Neuroendocrine Cancer Myths debunked April 6, 2017
- There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient April 4, 2017
- NETwork with Ronny © – Newsletter March 2017 April 1, 2017
- In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life March 21, 2017
- Poker Face or Cancer Card? March 20, 2017
- NETwork with Ronny © – Newsletter February 2017 March 1, 2017
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) February 27, 2017
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD February 21, 2017
- 25 Life Lessons From a Two-Time Cancer Survivor February 20, 2017
- Things not to say to someone with cancer February 2, 2017
- NETwork with Ronny © – Newsletter January 2017 February 1, 2017
- Endoscopy for NETs – taking the camera to the tumour January 27, 2017
- Road ahead closed – Bowel Obstructions January 25, 2017
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib January 21, 2017
- Progress report on NETSPOT® and PRRT (Lutathera®) January 18, 2017
- Neuroendocrine Cancer: Nodes, Nodules, Lesions January 17, 2017
- Neuroendocrine Cancer: To cut or not to cut? January 14, 2017
- Does your body now have an extra organ? The MESENTERY January 4, 2017
- NETwork with Ronny © – Newsletter December 2016 January 1, 2017
- Lanreotide vs Octreotide December 28, 2016
- Keep your light burning December 18, 2016
- Neuroendocrine Tumours: a spotlight on Pheochromocytomas and Paragangliomas December 14, 2016
- Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016 December 6, 2016
- Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! December 5, 2016
- NETwork with Ronny © – Newsletter November 2016 December 2, 2016
- NET Syndromes – chicken or egg? November 30, 2016
- Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. November 29, 2016
- Neuroendocrine Tumours – benign vs malignant November 28, 2016
- Happy Thanksgiving November 24, 2016
- Chemo or not Chemo – that is the question November 23, 2016
- Palliative Care – it might just save your life November 18, 2016
- “You must be doing OK, you’ve not had chemotherapy” November 16, 2016
- One every 2 hours November 10, 2016
- Scans for Neuroendocrine Cancer – If you can see it, you can detect it! November 5, 2016
- Neuroendocrine Cancer – Exciting Times Ahead! November 2, 2016
- Let’s hear one massive THUNDERCLAP on NET Cancer Day October 26, 2016
- Neuroendocrine Cancer: Hurry up and wait October 21, 2016
- Did you hear the one about the constipated NET patient? October 18, 2016
- Neuroendocrine Cancer – were you irritated by your misdiagnosis? October 11, 2016
- Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had October 5, 2016
- Neuroendocrine Cancer: Patient Power! October 1, 2016
- Neuroendocrine Cancer – tumour markers and hormone levels September 28, 2016
- “Not the Stereotypical picture of sick” September 19, 2016
- Procrastination – it’s a killer September 19, 2016
- Neuroendocrine Cancer – the diarrhea jigsaw September 15, 2016
- Please vote for Neuroendocrine Cancer September 12, 2016
- Serotonin – the NET effect September 8, 2016
- Neuroendocrine is not your average cancer but it can be pretty mean August 25, 2016
- Stop talking about it, just go do it! August 24, 2016
- Not every illness is visible August 8, 2016
- Neuroendocrine Cancer Nutrition Blog 4 – Food for Thought? August 2, 2016
- Living with Cancer – or Cancer Survivor? August 1, 2016
- Exercise and Cancer: Forward is Forward July 27, 2016
- NET Cancer: Somatostatin Receptors July 25, 2016
- NET Cancer: Troublesome Thyroids July 23, 2016
- What you don’t know might kill you June 24, 2016
- Neuroendocrine Cancer – it can be ‘smoke and mirrors’ June 15, 2016
- Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch June 13, 2016
- Let’s talk about living with NETs June 9, 2016
- Make some noise for a silent cancer June 8, 2016
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I found some of the quotes from the recent NET SEER Database study very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. The NET study is formally titled “Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States” (authored by Arvind Dasari, MD, MS; Chan Shen, PhD; Daniel Halperin, MD; et al). Although the study is US-based, it did represent the largest study of Neuroendocrine Tumors (NETs) ever recorded. Other national declarations of incidence and prevalence of NETs seem to bear these statistics out.
I covered the increasing incidence and prevalence extensively in my post “Neuroendocrine Tumors – not as rare as you think“. I looked at USA and beyond. Those who are regular readers of my articles will already know I’ve been ‘banging on’ about this for a few years. Other organisations and individuals (including NET specialists) are now indicating these tumors are not rare, some vindication for my aforementioned ‘banging on’.
There are two further quotes which I’d like to focus on in this article:
1. From the NET SEER Database study published 2017:
” …… many cases of NETs may not have been reported to cancer registries unless considered malignant…… it is likely that we have underestimated their true incidence and prevalence“
2. From Dana Farber (Kulke, Chan):
“Estimated more than 200,000 undiagnosed cases in the US”
But what do these quotes actually mean? Here’s my take!
Underestimating the true incidence and prevalence of NETs
When I studied the latest SEER NET data, I saw the authors were aware of the well-known faults in cancer registries worldwide and the effect this has on the true incidence and prevalence of Neuroendocrine Cancer. These issues, which are a worldwide problem, include the incorrect registration of Neuroendocrine Cancer as other types based on the anatomical location of the primary tumor (e.g. a Neuroendocrine Tumor of the Pancreas is recorded as Pancreatic Cancer). At this point, you may wish to check out my post “The Human Anatomy of Neuroendocrine Cancer” which provides some real life examples of the confusion between primary Neuroendocrine location and other cancers. That said, things are definitely improving because the latest SEER data shows a marked increase in the incidence of High Grade Neuroendocrine Carcinomas (NEC), an area where this issue is prevalent. A similar increase in NEC was also illustrated in the UK’s figures from Public Health England (PHE) in 2016 (click here) indicating that cancer registries are getting better and not before time (although it has to be said this only came about in UK due to a major intervention by NET Patient Foundation and others).
But there’s another issue impacting whether a diagnosis is actually entered on a cancer registry or not. Unfortunately, there are members of the medical community who still see well differentiated NETs as benign tumors, ‘not a proper cancer’ and some of them are still living in last centuries ‘Carcinoid World’. You can occasionally be excused for being out of date but being 7 years (plus) out of date is unacceptable. The WHO 2010 classification for NETs was based on the concept that all NETs have malignant potential. Here’s a quote from the UKINETS Guidelines in 2011 (Ramage, Caplin, Meyer, Grossman, et al).
Tumours should be classified according to the WHO 2010 classification (Bosman FT, Carneiro F, Hruban RH, et al. WHO Classification of Tumours of the Digestive System. Lyon: IARC, 2010). This classification is fundamentally different from the WHO 2000 classification scheme, as it no longer combines stage related information with the two-tiered system of well and poorly differentiated NETs. The 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.
The guidance in WHO 2017 reinforces this statement.
The undiagnosed NET patient population
From above, you can see why the incidence (and therefore the prevalence) of our disease has almost definitely been underestimated. However, that’s not the end of my story……..
A number of statements are clear about Neuroendocrine Tumors:
- Low/Intermediate grade well differentiated tumors are known to have been growing slowly over a number of years before discovery or accurate diagnosis occurs,
- They can be difficult to diagnose,
- They are not that well-known amongst the general medical population,
- Many people are initially misdiagnosed with another condition, with some this will result in late presentation with metastatic disease.
- Many NETs are found during autopsies.
It’s worth pointing out that one of the conclusions made by the recent SEER NET study is that the increase in incidence and prevalence can be attributed to a number of factors including earlier diagnosis. This is of course excellent news. Another conclusion of the study is that we are all living longer, reflecting improvements in therapies. This is also great news and is a factor in increased prevalence figures.
For example, in USA, a respected NET specialist stated that the autopsy find for ‘carcinoid’ is 4 times the recorded diagnosis rate. In Australia, one study claimed that 0.05% of all autopsies found a Pheochromocytoma or Paraganglioma. What is missing from these statements is whether the previously undiscovered tumors had been causing symptoms and the person either lived with them or had been misdiagnosed for something else during their lifetime.
Given the factors above, it’s also clear that many more diagnoses are on the way – as confirmed in the insightful (and brave) statement in the slide below. It’s also worth pointing out that the latest SEER NETs reported that the increase in incidence is due to earlier diagnosis, so in many ways we are finding some of the ‘invisible’ NET patient population. What this also says is that the figure of 200,000 was perhaps much higher 10 or 20 years ago.
I suspect there’s an invisible patient population for many conditions but the slow-growing and relatively quiet nature of Neuroendocrine Cancer means there could be a significant undiagnosed burden walking around, looking for a diagnosis, putting up with symptoms and being treated for other conditions. I see people on forums looking for clues, social media can sometimes be helpful here. That said, I do get the feeling some do not have NETs, regardless of the symptoms they associate with the disease, but I guess many of them will go on to be formally diagnosed with something. I’m contacted by many ‘undiagnosed’ people on my own blog and supporting Facebook sites (mostly privately) and I can tell you that’s a tough gig. I only hope I’ve given them some useful ideas about where to look or what to ask/suggest.
Clearly more awareness is required to catch more people earlier and from the latest SEER NET study, it appears this is starting to work. I feel earlier diagnosis is partly due to increased awareness, particularly in the medical world. I would also suggest it has improved in the general population due to the explosion of social media information dissemination. It’s also accurate to suggest that improvements in diagnostic capabilities are also playing their part in pushing up incidence rates, just as improved therapies have pushed up prevalence rates, something emphasised by Dasari (et al) in the recent SEER Data study.
The issues caused by inefficient registries together with ‘the undiagnosed’, suggest there is a large invisible NET patient population out there ……. we just need to find them!
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There’s been a lot of action in the area of what is termed Gastro-Entero-Pancreatic Neuroendocrine Tumors (GEP-NETs). It can therefore sometimes appear that Lung NETs are the poor relation. There are certainly some unmet needs in this area of the anatomy including a lack of research. Thus far, no prospective trials specifically for patients with lung NETs appear to have been reported.
However, there has been some recent movement. Last year, the use of Afinitor (Everolimus) was approved for progressive, non-functional NET of GI or Lung origin.
SPINET Trial for Lung NETs
In late 2016, I tipped you off about an Ipsen sponsored trial for Lung NETs involving Lanreotide (Somatuline). SPINET is a Phase 3, prospective, multi-center, randomized, double-blind, study evaluating the efficacy and safety of Lanreotide plus “Best Supportive Care” (BSC) versus placebo plus BSC for the treatment of well-differentiated, metastatic and/or unresectable, typical or atypical lung NETs. The aim of the SPINET study is to evaluate the safety and antitumor efficacy of Lanreotide 120 mg in patients with advanced lung NETs. I suspect that many Lung NET patients are already receiving somatostatin analogues (Octreotide/Lanreotide) but prescribed only for syndrome/symptom control.
SPINET is now recruiting in many locations (see below).
The countries involved in the SPINET trial are as follows (see the location details here in the trials document). Please also check the inclusion and exclusion criteria.
USA (21 locations)
Austria (1 location)
Canada (3 locations)
Denmark (2 locations – none recruiting yet)
France (7 locations)
Germany (4 locations)
Italy (5 locations – only one recruiting so far)
Netherlands (2 locations – none recruiting yet)
Poland (6 locations – none recruiting yet)
Spain (4 locations – only 2 recruiting so far)
UK (6 locations – only one recruiting so far)
In addition to the trial document linked above, you can read more about the SPINET trial here with commentary from a well-known NET Specialist – Dr Diane Reidy-Lagunes, who is the principal investigator for the trial.
How do I get on the trial?
You may be interested in this organisation – Trialbee. They are a company helping Ipsen to raise awareness of the SPINET trial using a cloud based platform to connect patients, investigators and sponsors (I’ve authenticated their participation with Ipsen). There is no fee for using their services. There’s a useful questionnaire which can help you decide if this trial is for you – here.
Please note, if you are concerned about participating in clinical trials, you should always consult your specialist for advice.
Thanks for reading
If you are a patient advocate or an advocate organisation, please share with your communities in order that Lung NET patients are at least made aware of the trial.
Don’t forget to VOTE FOR ME in the 2017 WEGO Health Awards – click here
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Welcome to my monthly ‘Community’ newsletter. This is July 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!). July 26th was the ‘Cancerversary‘ of my diagnosis – I’m still here after 7 years and I’m apparently a veritable newbie! There’s some great comments on my ‘I’m Still Here’ post – check them out … ‘click here’
The following news items may be of interest:
- Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here.
- PRRT takes a step forward to being approved in USA. Click here.
- Ipsen launches the German version of ‘Living with NETs’ website. Click here.
What’s happening on my Blog Site?
As per above, a quiet month. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs.
- At home with Lanreotide. News of an Ipsen sponsored at home nurse injection service. Let me know about your own experience with at home services so I can update my blog if necessary.
- The very latest on NET Grades and Stages. Includes updates from WHO 2017.
- Don’t believe the hype – 3 more NET myths added.
- NETwork with Ronny © – Community Newsletter JUNE 2017. My June 2017 newsletter ICYMI.
- Your favourite posts. All posts with viewing figures above 2000.
There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but most people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries. As for me, I’m ‘sticking to my guns’ on the subject.
I got some great comments on my monthly Lanreotide ‘butt dart’ post. Feel free to add questions. I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try! Check out the discussion here …… ‘click here’
NET Cancer Blog Activity
July was a slower month in ‘new’ blogging terms mainly due to holiday. I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients. Also, I’m still suffering with minor pain which has decided to move to my right hip (hopefully localising where the real problem is). Physiotherapist appointment is next week. However, despite a low month for brand new blogs, I managed to totally smash my monthly blog view record (after smashing it last month too!) ……..Thank you all so much for the support.
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer. Please also note that I cannot accept telephone calls on a one to one basis. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
I’ve been nominated for the 2017 WEGO Health Awards in three categories so far, Blog, Patient Leader Hero and Lifetime Achievement. If you remember last year, I made it to the final in two categories of Blog and Community and won the latter. A vote for me is a vote for Neuroendocrine Cancer awareness. VOTE HERE PLEASE
Click on ‘Endorse Ronny Allan’. It defaults to ‘Blog’ but the other two are there via the drop down menu. Thanks, I cannot get to the finals without the votes.
Awareness Activity in July 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 and are made aware of NETs in the process). 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. Currently 269 subscribers – up 12% on last month.
- I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. Other irons are in the fire but unable to bring you firm news just yet.
- I’m proud to be 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. This is the biggest cancer support organisation in the UK.
- I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read. Click here to read more.
- On 12 July, I delivered a ‘patient view’ presentation to Ipsen (UK) which was well received.
- On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance) Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients. I’m really looking forward to visiting and talking to this group.
Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently
Social Media and Stats
Blog Milestone. In July, I tipped a THIRD OF A MILLION views! Thank you all so much ♥ Keep sharing! On track for 400000 by end of the year.
Facebook Milestone. I met my target of 5000 followers a few months before my self inposed deadline date. I’m very grateful! 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.
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
- Facebook – 5007. This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
- Twitter – 4000 / 3095 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 337313
- Blog with most views: 12323 – The Human Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 January 2017. Why the spike? ….. “The Human Anatomy of Neuroendocrine Cancer”
- Most blog views in one week: 7538 in July 2017.
- Most blog views in one month: 20498 in July 2017. Why the spike? … these blogs here:
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WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and the sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in July. Onwards and upwards!
Thanks for reading
Hey, I’m also active on Facebook. Like my page for even more news.