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Ronny Allan
UPDATE AS AT 21 JAN 2023 – a leading US cancer organisation accepts that NETs are not rare
I don’t like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly “carcinoid” use is still rife in that part of the world. Let’s hope they will now get on with moving to the new paradigm I’ve been suggesting for a long time.
Read more in the “Meanwhile in USA” section.
Background
Although initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of Neuroendocrine Neoplasms (NENs) has increased exponentially over the last 4 decades and they are as common as Myeloma, Testicular Cancer, and Hodgkin’s Lymphoma. In terms of prevalence, NENs represent the second most common gastrointestinal malignancy after colorectal cancer. Consequently, many experts are now claiming NENs are not rare (see below).
A recent study published in Dec 2020 indicates that Rectal NETs may be vastly understated having been included in the databases for Colorectal Cancer and hidden from NET figures. Read more here.
A recent study published on 5 Dec 2018 reports that even if you isolate Small Intestine NETs in the USA population, the incidence rate is 9/100,000. Contrast this against the US incidence rate as at 2012 of 7/100,000 for all NETs. The rare threshold in Europe is 5/100,000 and below. They’re not common (in incidence rate terms which means the numbers diagnosed each year) but they are certainly no longer rare, a more accurate description would be ‘uncommon’.
However, on 7th January 2019, an internationally known NET Specialist described NETs as very common but he was talking in terms of the prevalence (how many people are living with the disease)
In fact, the graph of the SEER database figures for NETs in both 2004 and 2012 indicates the rate of incidence increase is faster than any other cancer on the planet, particularly attributed to lung, small intestine, and rectal NETs. The World Health Organisation’s revised classification of Neuroendocrine Neoplasms in 2010, abandoned the division between benign and malignant NET as all NETs have malignant potential and should be graded accordingly. The 2004 SEER data compiled did not take into account what might have been considered to be benign NETs.
However, the most recent USA study up to 2012 has confirmed the incidence beyond 2004 has continued to rise (and rise, and rise, and rise) and this is covered below in the section entitled “Meanwhile in USA”. One of the principal authors of both database studies has now gone public and said NETs are no longer rare.
Worth noting that many data studies preclude a type of Neuroendocrine Carcinoma called Small Cell Lung Cancer (SCLC) which is said to account for 15-20% of all Lung Cancers. This would significantly increase published data figures detailing the incidence and prevalence of Neuroendocrine Neoplasms.
Incidence and Prevalence
Before I continue, it’s important to understand the difference between incidence and prevalence. In the crudest of terms, incidence is the number of new cases of a disease being diagnosed (normally aligned to a specific quota of the population per year, generally 100,000). Prevalence normally indicates an amount of people living at any one time with a disease. It’s also important to note that different nations or groups of nations classify ‘rare’ in different ways – not really helpful when looking at worldwide statistics.
So why the increase? I suspect the reasons include (but are not limited to), more awareness (population and medical staff), better detection techniques and probably more accurate reporting systems, at least in USA, Norway, Canada and now in the UK i.e. a mixture of underdiagnoses and misreporting. The Canadian study is important as it also noted the proportion of metastases at presentation decreased from 29% to 13%. This is the first study that suggests an increased incidence of NETs may be due to an increased (and earlier?) detection. This has the knock on effect of increasing prevalence as most NET Cancer patients will normally live for longer periods. Add to this the plethora of better treatments available today, you have a highly prevalent cancer. Most of that is good news.
However, their true incidence may be higher owing to the lack of diagnosis until after death. For example, in USA, a respected NET specialist stated that the autopsy find for (excuse the outdated terminology) ‘carcinoid‘ is 4 times the recorded diagnosis rate. In Australia, one study claimed that 0.05% of all autopsies found a Pheochromocytoma or Paraganglioma. A very interesting slideshow from a well respected NET expert claimed there are 200,000 undiagnosed NET patients in USA. Slide below: You may also wish to check out my article “The Invisible NET Patient Population” where this is explored further.
US SEER 2004 – The Trigger and Turning Point
In the largest study of its kind up to that point, well-known Neuroendocrine Cancer expert James C. Yao researched the Surveillance, Epidemiology and End Results (SEER) database. His team studied 35,825 cases of Neuroendocrine Cancers in the United States covering data between 1973 and 2004. The report concluded that in 2004 there were 5.25 new cases of NETs per 100,000 people, compared with 1.09 per 100,000 in 1973 [1]. This is in contrast to the overall incidence of malignancies, which has remained relatively constant since 1992 (see the yellow line on the graph). The study also pointed out that due to increased survival durations over time, NETs are more prevalent than previously reported. If you analyse the NET data for 1994 (10 years before the end of the study period), you will see an incidence rate of approx 3.25/100,000. In 2004, the incidence rate had risen to 5.25/100,000. Although not an exact science, it does suggest the potential incidence rate at 2014 (10 years after the study period) might possibly have climbed well beyond 6/100,000 and even further if the same rate of increase displayed by the study had continued (spoiler alert – it actually came out as 7/100,000 see below under ‘Meanwhile in USA’). This study also confirmed a prevalence of 103,000 NET patients as at 2004. As this is regarded as the most accurate NET statistic ever produced, it is interesting to note that was at a time when the prognostics for NET were not as good as they are today indicating there must be a very significant increase if extrapolated to the current time. Moreover, this was prior to the WHO 2010 reclassification of NETs so more diagnoses will be counted today that were not counted in 2004. See below to see the significance of this figure (see section ‘Do the math’).
The 2004 data was an astonishing set of statistics – particularly as they were based on 12 year old data. However, there is now new data up to 2012 that overtakes the above-mentioned groundbreaking study and confirmed the incidence is now even higher. See section entitled “Meanwhile in USA …….”
Rare but collectively common?
Some will claim that some of the individual types of Neuroendocrine Neoplasm are rare, so the disease is rare. That’s clutching at straws really, there’s a rare type of breast cancer but that disease is hardly rare. On that subject let’s talk about something no one really seems to want to talk about – Small Cell Lung Cancer (SCLC) which is a type of Neuroendocrine Carcinoma. On its own this type is not rare (around 15% of all cancers of the lung).
Meanwhile in UK …….
A new study in 2022 confirms that Neuroendocrine Neoplasia (NEN), a term which encompasses all Neuroendocrine Carcinomas and Neuroendocrine Tumours, is a “formerly rare cancer“. It also goes on to say “NEN can now no longer be defined as a rare cancer”.
Even these figures are understated because it does not include Lung Neuroendocrine Carcinomas (i.e. SCLC and LCNEC) and Merkel Cell Carcinoma.
This follows an earlier piece of work from Public Health England (PHE) which indicates the incidence of NETs has risen to almost 9/100,000 (i.e. not rare) using the latest International Classification of Diseases for Oncology (ICD-O) methodology version 3 – ICD-O-3. Even that figure is understated because it does not include Lung Neuroendocrine Carcinomas (i.e. SCLC and LCNEC). As at 31 Mar 2016, the age-standardised incidence rate for NETs in England (excluding small and large cell neuroendocrine carcinomas, SCLC and LCNEC respectively) was 8.84, 8.37 in males and 9.30 in females – rising from 3.9 in 2001. These figures are from the NET Patient Foundation and were issued as a result of a NPF and PHE (NCRAS) partnership project which has been compiling statistics on the incidence, prevalence and survival of NET Patients in England using English cancer registry data. They also have an aim to also access the rest of UK cancer registry data to get UK wide figures.
That means a new NET diagnosis every 2 hours. You can see a summary of the report NEW: Public Health England release new incidence data for Neuroendocrine Cancer
A slide from the recent UKINETS 2017 conference indicating an agreement from UK and Ireland NET Specialists.
Meanwhile in Australia ……
Did you know Neuroendocrine Cancer is the 7th most common in Australia? And that someone will be diagnosed in Australia with Neuroendocrine cancer every one or two hours?
Read this article here: Little known, complex cancer on the rise | 7NEWS
Australian doctors are on board with the math rather than the myth.
This article appeared in the June 2019 Edition of ePathWay which is an online magazine produced by the Royal College of Pathologists of Australasia (http://www.rcpa.edu.au/Library/Publications/ePathway). In Issue #092 in June 2019 published by the Royal College of Australasia, an interview with top pathologist Professor Anthony Gill said that NETs are uncommon but not rare.
And in 2022, Australia declared that NETs were the 7th most common cancer in that country. Read more here
Meanwhile in Norway ……
Norway has a strong record in getting accurate registry data and now claims to have the most up-to-date Neuroendocrine Neoplasm (NEN) registry in the world. It follows that the Norway figures may well be what everyone else is experiencing but their cancer registries fail to output it properly. 
In a new study published on 17 March 2023, From 1993 to 2021 altogether 10,288 NETs and 13,982 (1.756 outside the lungs) NECs were diagnosed. The incidence of NETs increased from 3.72 to 9.97 per 100,000 per year, corresponding to a 268% increase. The prevalence (people alive with the condition) for NENs increased 666% during the study period, NETs increased from 10.77 to 99.37 per 100.000 (927%). For NECs the increase was from 7.4 to 21.56 per 100,000 (291%) – you would expect NEC to be lower of course. (Ronny Allan comment – in addition to better cancer registry management, the huge prevalence increase may be reflecting earlier diagnoses, more specialist centres and better treatments).
, . Incidence and prevalence of neuroendocrine neoplasms in Norway 1993–2021. J Neuroendocrinol. 2023;e13264. doi:10.1111/jne.13264
Abstract
“The incidence of neuroendocrine neoplasms (NENs) has increased over the last decades. The prevalence of NENs has to a lesser extent been previously reported. We wanted to study the trends in incidence and prevalence of NEN in Norway from 1993 to 2021 through the Cancer Registry of Norway. This registry, which covers the whole population, has been found to be 99% complete. The neoplasms were classified as neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs). From 1993 to 2021 altogether 10.288 NETs and 13,982 (1.756 outside the lungs) NECs were diagnosed. The incidence of NETs increased from 3.72 to 9.97 per 100,000 per year, corresponding to a 268% increase, p < .001. The largest increase in incidence for NETs was found for pancreas (338%), lung (330%) and small intestine (303%). For NECs there was no change in the incidence, from 9.74 to 9.95 per 100,000 per year, p = .4, but there was an increase in the incidence of NECs originating from the skin (Merkel cell carcinoma) (287%), p < .001, and the GI tract (200%), p = .03. There were no changes in stage distribution at diagnosis for NETs and NECs. The prevalence for NENs increased 666% during the study period, NETs increased from 10.77 to 99.37 per 100.000 (927%), p < .001. For NECs the increase was from 7.4 to 21.56 per 100.000 (291%), p < .001. GI-NECs increased the most from 0.005 to 0.94 (1880%), p = .002. In conclusion, there was a substantial increase in incidence and prevalence of neuroendocrine neoplasms in Norway from 1993 to 2021. This is the first study to report complete prevalence of NENs for a whole nation.”
————————————————
The previous update on Norway’s excellent work was presented at ENETS in 2019 – see below:
If we take Norway’s figures, the true NEN incidence rate is almost 3 times the figures most people quote. Interestingly, as pointed out by Dr Thor, the prevalence of small intestine NETs is almost 10 x the incidence rate and almost 17 times the incidence rate for appendiceal NETs.
Meanwhile in Canada …….
CNETs have highlighted an article published in the magazine ‘Cancer’, February 15, 2015, showing that the incidence of Neuroendocrine Tumours has markedly increased in Canada over the course of 15 years (1994-2009). The results showed that the incidence of Neuroendocrine Tumours has increased from 2.48 to 5.86 per 100,000 per year. [3] [4]
Meanwhile in New Zealand …….
Meanwhile in USA …….
UPDATE AS AT 21 JAN 2023 – a leading US cancer organisation accepts that NETs are not rare
I don’t necessarily agree with some of the words used but this is huge progress for USA. What I found most interesting is the claim that calling it rare when it’s not is potentially linked to a lack of research. “As a result of perceived disease rarity and nonmalignant clinical course, NENs have not been subjected to rigorous clinical research, as compared with other similar tumor types”. Read more by clicking here.
Original section of the article continues:
The latest evidence of its rise is contained in the largest ever study ever conducted. It is based on data up to 2012 so it’s worth noting that in 2022, this data is now 10 years old (8 years for the project prevalence figure), so even these figures may still be conservative. The document, which was published in 2017 can be found here: Click here. A short summary follows:
In this population-based study that included 64 971 patients with neuroendocrine tumors, age-adjusted incidence rates increased 6.4-fold between 1973 and 2012, mostly for early-stage tumors. Survival for all neuroendocrine tumors has improved, especially for distant-stage gastrointestinal and pancreatic neuroendocrine tumors.
Of the 64 971 cases of NETs, 34 233 (52.7%) were women. The age-adjusted incidence rate increased 6.4-fold from 1973 (1.09 per 100 000) to 2012 (6.98 per 100 000). This increase occurred across all sites, stages, and grades. In the SEER 18 registry grouping (2000-2012), the highest incidence rates were 1.49 per 100 000 in the lung, 3.56 per 100 000 in gastroenteropancreatic sites, and 0.84 per 100 000 in NETs with an unknown primary site. The estimated 20-year limited-duration prevalence of NETs in the United States on January 1, 2014, was 171 321
Conclusion: The incidence and prevalence of NETs have continued to rise in the United States, owing to the increased diagnosis of early-stage disease and possibly stage migration. The survival of patients with NETs has improved, and this improvement has been greater for those with distant gastrointestinal NETs and, in particular, distant pancreatic NETs.
Combine with a revised annual incidence rate of 23,000 and the very well-known fact that NETs are a highly prevalent disease, it must be mathematically impossible for the figure not to be above the USA rare threshold of 200,000 in 2017. As you can see from the graph below, the incidence rate for NETs continues to outstrip the incidence rate for all malignant neoplasms (another word for tumour). Amazingly, the report authors even state “…….. it is likely that we have underestimated their true incidence and prevalence”.
A recent study published on 5 Dec 2018 reports that even if you isolate Small Intestine NETs in the USA population, the incidence rate is 9/100,000. Contrast this with the US incidence rate as of 2012 of 7/100,000 for all NETs (10 years ago as of 2022). They’re not common (in incidence rate terms which means the numbers diagnosed each year) but they are certainly no longer rare, a more accurate description would be ‘uncommon’.
Meanwhile in Norway ……
Norway has a strong record in getting accurate registry data and now claims to have the most up-to-date Neuroendocrine Neoplasm (NEN) registry in the world. It follows that the Norway figures may well be what everyone else is experiencing but their cancer registries fail to output it properly.
In a new study published on 17 March 2023, From 1993 to 2021 altogether 10,288 NETs and 13,982 (1.756 outside the lungs) NECs were diagnosed. The incidence of NETs increased from 3.72 to 9.97 per 100,000 per year, corresponding to a 268% increase. The prevalence (people alive with the condition) for NENs increased 666% during the study period, NETs increased from 10.77 to 99.37 per 100.000 (927%). For NECs the increase was from 7.4 to 21.56 per 100,000 (291%) – you would expect NEC to be lower of course. (Ronny Allan comment – in addition to better cancer registry management, the huge prevalence increase may be reflecting earlier diagnoses, more specialist centres and better treatments).
, . Incidence and prevalence of neuroendocrine neoplasms in Norway 1993–2021. J Neuroendocrinol. 2023;e13264. doi:10.1111/jne.13264
Abstract
“The incidence of neuroendocrine neoplasms (NENs) has increased over the last decades. The prevalence of NENs has to a lesser extent been previously reported. We wanted to study the trends in incidence and prevalence of NEN in Norway from 1993 to 2021 through the Cancer Registry of Norway. This registry, which covers the whole population, has been found to be 99% complete. The neoplasms were classified as neuroendocrine tumors (NETs) and neuroendocrine carcinomas (NECs). From 1993 to 2021 altogether 10.288 NETs and 13,982 (1.756 outside the lungs) NECs were diagnosed. The incidence of NETs increased from 3.72 to 9.97 per 100,000 per year, corresponding to a 268% increase, p < .001. The largest increase in incidence for NETs was found for pancreas (338%), lung (330%) and small intestine (303%). For NECs there was no change in the incidence, from 9.74 to 9.95 per 100,000 per year, p = .4, but there was an increase in the incidence of NECs originating from the skin (Merkel cell carcinoma) (287%), p < .001, and the GI tract (200%), p = .03. There were no changes in stage distribution at diagnosis for NETs and NECs. The prevalence for NENs increased 666% during the study period, NETs increased from 10.77 to 99.37 per 100.000 (927%), p < .001. For NECs the increase was from 7.4 to 21.56 per 100.000 (291%), p < .001. GI-NECs increased the most from 0.005 to 0.94 (1880%), p = .002. In conclusion, there was a substantial increase in incidence and prevalence of neuroendocrine neoplasms in Norway from 1993 to 2021. This is the first study to report complete prevalence of NENs for a whole nation.”
————————————————
The previous update on Norway’s excellent work was presented at ENETS in 2019 – see below:
If we take Norway’s figures, the true NEN incidence rate is almost 3 times the figures most people quote. Interestingly, as pointed out by Dr Thor, the prevalence of small intestine NETs is almost 10 x the incidence rate and almost 17 times the incidence rate for appendiceal NETs.
Meanwhile in Spain ……
In a study covering the period 2010-2015, the diagnosis rate has doubled. Perhaps influenced by improvements in awareness and diagnostics, it’s still an astonishing increase in a short space and an indication that the true incidence rate has been underestimated and under-reported for some time. Read more here.
Meanwhile in Pheochromocytoma/Paraganglioma ………
I suspect on their own, these types of Neuroendocrine Tumours are rare based on the numbers but things are changing. Check out this short video clip from the Pheo/Para Alliance. Let’s do some maths: Based on the US population of 320,000,000, that’s 106,666.
A few more facts about Pheochromocytoma/Paraganglioma:
- In Australia, one study claimed that 0.05% of all autopsies found a Pheochromocytoma or Paraganglioma.
- The Mayo Clinic experience shows that in up to 50% of cases of pheochromocytoma, the correct diagnosis is made at autopsy (ergo the incidence rate could be double what is published).
- Here is an article claiming that former US President Dwight D Eisenhower had a biopsy confirming he had a Pheochromocytoma. Click here
Meanwhile in Rectal NETs …….
It would appear many Rectal NETs are being hidden within colorectal cancer statistics – check out the numbers in here – click.
Let’s do the Math
Neuroendocrine Cancer is not only the fastest growing cancer in incidence terms but as a group of cancers, given the mounting epidemiological evidence, it can no longer be rare as a grouping of cancers. Neuroendocrine disease IS NOT RARE.
For example, if you roughly extrapolate the US SEER data graph above to 2017 and recalculate the prevalence rate based on 23 000 per year from the 2014 figure of 171 321. Unfortunately, some people will have passed, but it’s well documented as a highly prevalent cancer and therefore more people live. The prevalence of neuroendocrine tumors in USA was higher than the combined estimated prevalence of esophageal cancer (n = 36,857), gastric adenocarcinoma (n = 79,843) and pancreatic adenocarcinoma (n = 49,620) in 2013. In fact, one of the conclusions of the 2012 SEER report is that we are living longer with NETs. This is in line with many other cancers due to improved diagnostic and treatment regimes. Cleary more work still needs doing.
The Invisible NET Patient Population
The heading of this section is my name for those who have not yet been diagnosed with NETs but are walking around having been either misdiagnosed, diagnosed with another cancer in the same part of the anatomy, living and putting up with the symptoms whilst the tumours grow. Read my Invisible NET Patient Population article here. To add to this part of the underdiagnoses of NETs is this most amazing piece of research published in 2018 – Pan-cancer molecular classes transcending tumor lineage across 32 cancer types, multiple data platforms, and over 10,000 cases. It was published in the American Association of Cancer Research (AACR) journal ‘Clinical Cancer Research and authored by Chad Creighton et al. D. This was a pan cancer piece of research which indicated that Neuroendocrine disease may be more prevalent than anyone had ever thought. There’s a summary article here which I suggest you read fully. The rather explosive extract is as follows:
Go figure
Whilst reporting has been improved, it is most likely still not 100% accurate. Therefore, even the figures above may be understated due to an incorrect cause of death reporting and incorrect diagnosis/recording of the wrong cancers (e.g. pNETs recorded as Pancreatic Cancer, Lung NETs recorded as Lung Cancer, etc). This is certainly still happening in UK and I suspect in most other countries. Add to that the regular reports of Neuroendocrine Tumours being found during autopsies and you have the potential for an even further unrecorded increase had these been found prior to death. In fact, according to SEER 2012, the true incidence and prevalence is most likely underestimated. In fact here is a statement straight from the horse’s mouth:
The issue is also complicated by the method used in USA for naming a disease ‘rare’. Rather than use incidence rates, the USA uses the number of people living with the disease at any one time (i.e. essentially the prevalence). This is currently 200,000 as a threshold – anything below that is considered rare. It seems mathematically impossible for NETs to be less than 200,000 given the data provided above.
When I first started researching NETs back in 2010, the US figure (which varies from source to source) was around 125-150,000. Why are people quoting figures less than this in 2017 when the 2014 figure has now been confirmed above? There also seems to be a selective omission of the new US incidence rate of 7/100,000.
You will also see that Dana Farber is estimating more than 200,000 people are as yet undiagnosed. Even if that were 50% accurate, it would put the current prevalence figure in US over 300,000.
Let’s cut to the chase – NETs are not rare, they are just less common
Are we shouting loud enough about this? I don’t think so. ‘Rare’ is very frequently used within the NET community almost to the point of being a status symbol. Based on these figures, this looks like an outdated approach along with its associated icons. The evidence above is so compelling that saying the group of cancers officially called Neuroendocrine Neoplasms is rare is starting to sound like fake news.
“A neoplasm on the rise. More prevalent than you may think. Incidence increased dramatically during past 3 decades” (Novartis)
“it’s less rare than we used to think. It’s more malignant than we previously thought” (Dr Richard Warner)
“…..it is one of the most rapidly increasing cancers in the U.S. There has been a 500-percent increase in the last 30 years” (Dr Edward Wolin)
“Estimated more than 200,000 undiagnosed cases in the US” (Dana Farber)
“I actually think NETs are not a rare cancer” (Dr James Yao)
“NETS will no longer be rare” (UKINETS 2017 one of the opening slides)
“NETs are no longer rare” (Dr Andrew Hendifar)
“…..when you think of prevalence, NETs are actually quite common” (Dr Jonathan Strosberg)
“One study showed that the number of people diagnosed has risen 50% over the last decade and unfortunately, I worry that is an underestimate” (Dr Eric Liu)
“Neuroendocrine Cancer – NETs are not rare, just less common. We need a new paradigm” (Ronny Allan since 2015)
“NETs are uncommon but not rare” (Professor Anthony Gill)
You may also wish to check out my article “The Invisible NET Patient Population” where this is explored further.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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Hi Ronnie. I am new to these ideas, but after having Carcinoid tumors in my family and myself having Type 1 diabetes, Hashimoto’s hypothyroidism, a rare metabolic genetic disorder called Cobalamin C disorder, and my gynecologist actually believing I had a neuroendocrine tumor which ended with very high testosterone numbers and an appendectomy (although they could not find a tumor in the appendix), I believe I have a predisposition for Carcinoid tumors. I have read that bloodwork for PCAs can be done to monitor for Carcinoids, but my geneticist will not agree to test me regularly. My questions are: Do you know of research I can use to support getting regular monitoring labs done? And, do you know of other tests that can be done to monitor? Given that symptoms do not generally occur until later in the disease, I am hoping to be proactive. Thank you!
How many in your family?
Genetic types of NET are quite rare perhaps around 5% of all NETs.
https://ronnyallan.net/2017/10/02/genetics-and-neuroendocrine-tumors/
Re tests, not as easy as that.
Can you address poorly differentiated a little more? Also no primary statistics?
sure. There’s linkages to the NET SEER report in the article. Check the different tables – Grade 3 (Ignore Grade 4, that is simply a label to use for another piece of data). I’ll paste it here for ease of reference https://ronnyallan.files.wordpress.com/2015/07/jamaoncology_dasari_2017_oi_170015.pdf
Is there any of record of net cancer being cured with cannabis or does it help
http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/
No proper scientific evidence that it cures any cancer.
I have always maintained that I do not think NETs are rare, but rarely diagnosed…otherwise, 90% plus of us wouldn’t be diagnosed at the stage 4 level or misdiagnosed for 6 to 10 years. And when we see the numbers of new cases each year around the world, I cannot believe that this increase is due to newness of disease, but rather newly diagnosed.
When patients start asking questions, daring to challenge, learn to advocate for themselves, and stop thinking that someone else has all the answers for them, I think we will start seeing differences in numbers. It starts with educating self, and then others. Awareness is always key.
Agreed Coral. The patient has a part in their own diagnosis. With NET CANCER it’s a bigger part. Happy veterans day!
Thanks, Ronny. I so appreciate your doing so much for the education/awareness for others. You do it tirelessly. I am proud to know you.
This is a tremendously important post, Ronnie (thank you, thank you). Raising awareness of NETs–and thereby improving research, funding, detection, and treatment prospects–is far more effectively done by highlighting their fast-rising incidence and prevalence than by continuing to (mis-)characterize NETs as rare.
I hope your hard work leads to a more “common” way of thinking about NETs!
This is a tremendously important post, Ronnie–thank you, thank you. To really help raise awareness of NETs (thereby improving research, funding, detection and treatment opportunities) it is far more helpful to highlight the fast-rising incidence and prevalence of NETs than to continue (mis-)characterizing them as “rare.”
I hope your hard work inspires a more “common” way of thinking about NETs!
thanks Jill. Some people will have difficulty with the concept but hoping to win them round 🙂
[…] the reason that so many people have such bad experiences is that NETs is a rare disease (although not as rare as once thought), and even most medical professionals have little to no experience with it. Often their information […]
Probably a dumb question, but does the 100,000 refer to cancer cases or population?
A cancer incidence rate is the number of new cancers of a specific site/type occurring in a specified population during a year, usually expressed as the number of cancers per 100,000 population. That is, Incidence rate = (New cancers / Population) × 100,000
So for example if the incidence rate for ‘Cancer Type A’ is 10 / 100,000 and the population of the country is 10 million, that means there would be 1000 people diagnosed each year with ‘Cancer Type A’.
Great question Cherie and not dumb at all (on the basis I had to think about it!)
I think it is extremely important that you’ve identified the earlier and better awareness and diagnostic techniques as, possibly, the greatest factor in the increase in Incidence, Ronny. Particularly as it correlates with the decrease in metastasis. I am so very grateful that so many more community doctors, oncologists, and other specialists are learning about, and studying, NET cancers. That is our greatest tool to help others who, too often, are still misdiagnosed for many years. I also believe this correlation is critically important to dispelling the fear mongers who want to blame “big pharma” and the medical profession in general for “causing” or “not curing” cancer for their benefit and profit. I have yet to meet a medical professional or pharmaceutical researcher who is not concerned about, and focused on, curing the Big C!
great to hear Ron!
just came accross this! http://www.crediblehulk.org/index.php/2015/07/02/10-reasons-why-hidden-cancer-cure-conspiracy-theories-fail/
I agree with Emma that in my experience it is not rare but still rarely diagnosed. I suspect because Doctor’s are associating carcinoid with carcinoid syndrome which does not always appear, especially in earlier stages. After many years of abdominal pain with no apparent cause, my brother was diagnosed with midgut carcinoid with mets to liver in 2005 and didn’t experience carcinoid syndrome until his liver had a tumor volume of 90%. Another friend went to ER repeatedly for vomiting but was never diagnosed until they determined that he had liver tumors that had metasthesized from the lung. He was treated for lung carcinoma and passed away 6 months later. His obituary stated death by lung cancer but I had spoken to his wife who confirmed it was neuroendocrine. Another friend had digestive issues for a long time and was assured by her GI doctor that she did not have pancreatic cancer. She was only diagnosed when the P-NET had engulfed her biliary ducts and hepatic vein causing death by bleeding 3 months later. The death certificate stated “pancreatic cancer” as cause of death. Ironically her husband had worked for Steve Jobs. My point is if I am aware of 4 cases among my family and circle of friends, how can it be rare?
I cringe when I think about the number of people who may have died and had their death recorded as something else. Additionally, when people with a Lung, Pancreatic or Small Intestine NET, have had their illness recorded as Lung Cancer, Pancreatic Cancer and Bowel Cancer – not to mention all the other areas of the anatomy. I have a plan to blog about Carcinoid Syndrome and Carcinoid Cancer – particulary about how they are sometimes (incorrectly) used interchangeably.
Thanks for the comment – amazing story!
Nice post Ronny. I think one of the major reasons for the increase in prevalence of the disease was the introduction of somatostatin analogues (Sandostatin LAR and octreotide) in the mid-1990’s which increased the life expectancy of NET patients dramatically.
I would agree with you Beth and suggest the years since these studies were carried out may have even boosted it further! It’s a real positive.
In my own experience it certainly doesn’t seem rare, my husband was diagnosed in December, a colleague two desks over realised that it was the same rare type as her grandma has been diagnosed with around two years ago, then another colleague said her sister has it too, although hers is pancreatic. It has been a great support having people closely affected within my immediate work environment, comparing experiences of treatment, especially as the other two are being dealt with in London, whilst my husband has opted for the Birmingham Centre of Excellence. The team at Birmingham have recently confirmed he has one metastatic liver tumour which is 2.2mm and are planning radiofrequency ablation to remove it.
Amazing Emma! – Good luck to husband!
Ronnie these stats show that NETs are increasing but malignancy decreasing. Therefore NET cancer is decreasing. This is good news because it means tumours are being caught early before they metastasise. That’s one interpretation anyway, if you follow that train of logic Net Cancer is still rare.
I think I see where you’re going with that but I do not believe the stats have taken malignant vs benign (which is itself a moot point) into account. I think certain types of NET are rare (i.e. anything other than Lung, Small Intestine or Rectal) but our group of cancers counts as one cancer and therefore that is what statistics measure (similar situation to different types of breast cancer for example). I believe there is a lot of merit in not being called rare as I alluded to in the blog. Thanks for taking the time to comment Linda – hope you are well?
Ronnie I do agree that its not as rare as we are all led to believe, mainly down to under diagnosis. I do think however if the researchers cant get their terms right then the research is mince. In this case I suspect they have got it right otherwise why make the distinction. Do you have a link to the full research paper? It is important to get this right.
the research is based on USA but as you’ve seen from the blog, Norway and more recently Canada confirm big rises. The links are in the blog marked [1], [2] etc. The USA is very good at recording due to insurance company requirements (i.e. they don’t get paid unless the treatment/diagnosis matches the ICDs). A UK consultant told me last week, the NHS is not very good and one should multiply whatever figure you’ve got for NETs by 5. I suspect because NHS/NICE take an anatomy based approach to diagnosis and I suspect if they get recorded at all, there will be many incorrect recordings, i.e. lung NETs as lung cancer etc (you only need to look at the recently updated NICE guidelines on Cancer diagnosis to see it’s a total disaster for NETs).
Ronnie I think I see what you mean now. As a non medical person it beggars belief that in the uk we have no data base for these tumours. Actually we have no real idea what the real incidence rate is because its not recorded properly. Some of these studies don’t even take into account the full range of NETs but give no indication of why not possibly because metastatic disease is so rare in these net types? What a mess. More research needed!