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Ronny Allan
Edited and refreshed 16th March 2023
OPINION
There’s a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations.
All the graphics below contain links to relevant blog posts.
Myth 1: All Neuroendocrine Neoplasms will metastasise
Simply untrue. They are a heterogeneous group of tumours. Read more here
Myth 2: All Neuroendocrine Tumours are terminal
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.
Myth 3: All Neuroendocrine Tumours are benign
Not true. By any scientific definition, the word ‘tumour’ means ‘an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)’. Sure, some NETs will be benign but a tumours which spreads away from the primary site cannot be benign by any scientific definition. However, since the World Health Organisation (WHO) 2010 classification for digestive systems, the situation has been based on the concept that all NETs have malignant potential, and therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential. This has been reinforced in the 2017 Endocrine update to include clarification for endocrine organ types of NET including Pheochromocytoma and subsequently (and more forcefully) in the 2019 Digestive Systems update. 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.
Myth 4: “NET Cancer” is an official term
Not true. Aside from the ridiculous grammar “Neuroendocrine Tumour Cancer” is not the way to describe our cancer. The correct terms can be found by reading here
Myth 5: 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). Doctors (including some NET specialists) and patient organisations need to catch up. Read more here and here.
Myth 6: All NET patients get ‘carcinoid syndrome’
Not true. Firstly, many NETs are non-functional; and secondly, carcinoid syndrome is only one of a number of “NET Syndromes” and is only associated with serotonin-secreting NETs. 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.
When you read the content of the average social media patient group, it’s almost as if everyone has a syndrome, and often there is only one syndrome mentioned. The issue is exacerbated by health sites (including NET sites) that only talk about carcinoid and carcinoid syndrome as if it applies to all NETs. Moreover, statistics collected over decades are ignored and this issue is exacerbated by flawed statistics emanating from certain advocate organisations that take most of their data from late-stage syndromic patients. But in reality, only 10% of cases involve carcinoid syndrome (where that syndrome is appropriate).
Read more here.
Myth 7: Neuroendocrine Neoplasms 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“.
Myth 8: 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 9: Aretha Franklin had Pancreatic Cancer
Not true. Aretha Franklin had a Neuroendocrine Tumour of the Pancreas. Ditto for a few other famous names. Read more here.
Myth 10: 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 in certain scenarios, 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 NETs 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.
Myth 11: 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.
Myth 12: NET 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.
Myth 13: 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. Also, many are incidentally detected as an investigation leads to a scan or imaging – that is not a misdiagnosis. 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.
Myth 14: 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.
Myth 15: 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 16: 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.
Myth 17: 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
Myth 18: 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.
Myth 19: 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:
Myth 20: Multiple Endocrine Neoplasia (MEN) is a type of Neuroendocrine Tumour
Not true. Multiple Endocrine Neoplasia (MEN) 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
Myth 21: 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 the quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of the disease. Read more here
Myth 22: Serotonin is found in foods
Not true. Serotonin is manufactured in the body. Some dietary sites might be saying this because it simplifies the explanation for readers. We’re not stupid, tell us about tryptophan etc. Read more here
Myth 23: 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 publications that are authored by our top specialists. If we can’t believe them, who can we believe? Read more here.
Myth 24: 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.
Myth 25: High Grade means Neuroendocrine Carcinoma
Not true. Since 2017, Grade 3 (high grade) comprises well-differentiated tumours (NETs) and poorly differentiated tumours (Neuroendocrine Carcinomas or NEC). Only poorly differentiated tumours are carcinomas. Read more here.
Myth 26: Chemo doesn’t work for NETs
Not entirely true. Chemo is commonly used in Grade 3 (high grade), particularly poorly differentiated. Also used in some grade 2 scenarios. Read more here.
Myth 27: Audrey Hepburn had Neuroendocrine Cancer
Not true. Audrey Hepburn had an Appendiceal/Peritoneal malignancy known as Pseudomyxoma Peritonei (PMP). Her son Sean is a patron of the PMP survivor foundation.
Read more here.
More to follow no doubt
For general cancer myths and the dangers of fake health news, please see my ARTICLE HERE
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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My sweet sister has a rare rash from her endocrine tumor & has been searching for answers that she hasnt been able to find. She is miserable & is hoping for any advise from someone who has experienced the same. When she is able to receive her chemo medication the rash subsides. Because of her low blood count & no chemo the rash has violently spread. She is in so much pain. Is there any sites, people or group that she can connect with to receive at least food for the mind? It would be GREATLY APPRECIATED!
Hi Katrina – a bit difficult to answer this questions without knowing where you are. What type fo Neuroendocrine Tumour does she have, where is the primary tumour located?