When you’re diagnosed, you go through a whole host of emotions. It’s not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words “you have cancer”, it’s other stuff such as anger and denial. With the latter, the denial normally wears off as you finally accept the predicament. In hindsight, the anger is interesting because there can be a mixture of thoughts including “why me“, “what could I have done to head this off“; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility. We all react differently but in general terms our experiences can be categorised into 3 main areas: initial reaction, distress and then adjustment.
Initially, I was frustrated I didn’t know what had caused my cancer, perhaps my thinking was that I could warn others. Those feelings soon wore off as I discovered that no one really knows why people succumb to certain cancers. If we really knew what caused certain cancers and it was something in our control, that will lead to very clear prevention strategies such as we see with smoking and Lung Cancer for example.
If you don’t know what caused your NET, you’re not alone. According to several studies in the past 10 years, around 40% of cancers are preventable indicating that up to 60% might just be plain bad luck. Clearly, this figure varies between cancer types with the biggest culprits being Lung and Skin cancer with too much exposure to tobacco and ultraviolet light respectively. However, the reports also pointed out that people can and will still get these cancers without significant exposure to the commonly preventable causes. The large study is interesting because it raises the issue that some cancers may be totally unavoidable as they are caused by random errors associated with DNA replication. This study remains controversial because it undermines government prevention strategies. There’s a balanced article from Cancer Research UK which is a useful read (interesting quote … “Even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers admit that the cancers they cause may still be preventable”).
Risk Factors
In the same way that correlation does not mean correlation, risks factors are just that, they are increased risks of succumbing to disease and these risks may be realised to become related to the cause of the disease. But it must be emphasised that the presence of a risk factor does not mean there will be an effect. A good example of cancer is smoking. Smoking is the biggest preventable cause of cancer in many countries. There’s a chance of reducing the risk or even preventing the effect by stopping or reducing smoking. Not everyone who smokes tobacco will get cancer, but it is a known risk factor.
So, what causes Neuroendocrine Neoplasms – An Evidence‑Based Overview
Most NENs — including both neuroendocrine tumours (NETs) and neuroendocrine carcinomas (NECs) — do not have a single known cause. The best current evidence points to a combination of genetic predisposition, cell‑of‑origin biology, and acquired cellular changes that allow certain cells to become neuroendocrine or “neuroendocrine‑like” over time. Below is a structured breakdown of what the evidence shows.
1. Most NENs Are Sporadic (No Known Cause)
Large epidemiological studies and cancer organizations consistently report that most neuroendocrine cancers arise without any identifiable cause. These are called sporadic cases. This means that for the majority of patients, no lifestyle, environmental, or inherited factor has been proven to trigger the disease.
2. Inherited Genetic Syndromes (Well‑Established Risk Factors)
A small but important minority of NENs arise due to heritable mutations. These are the strongest known causal factors.
Risk Factors for NETs. Not a lot is known about what actually causes most types of neuroendocrine tumours, so there aren’t many strategies to prevent them. People with certain risk factors are at a higher risk of developing neuroendocrine tumours than others, these risk factors include:
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- A family history of:
- multiple endocrine neoplasia (MEN) syndromes and other familial-related syndromes.
- Hereditary paraganglioma/pheochromocytoma.
- Von Hippel-Lindau syndrome
- Neurofibromatosis Type 1
- Tuberous sclerosis complex.
- Certain conditions that affect the stomach’s ability to produce stomach acids, such as atrophic gastritis or pernicious anemia, orZollinger-Ellison syndrome. Hypergastrinaemia can lead to Type I (atrophic gastritis) and Type II (secondary to gastrinoma) gastric NETs share the same fundamental causal pathway. What differs is the source of the hypergastrinaemia, not the biology of tumour formation.
- Although the evidence remains weak, many papers discuss the relation between long term use of proton pump inhibitors and Gastric NET – click here
- Smoking tobacco (e.g. Small Cell Lung Cancer (SCLC and Large Cell Neuroendocrine Carcinoma of the Lung)).
- Merkel Cell Carcinoma (MCC) is a type of Neuroendocrine skin cancer. UV exposure is a major, well‑established cause of MCC. But it’s only one of the two biological routes to this cancer. The other major cause is Merkel cell polyomavirus (MCPyV).
- A family history of:
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Correlation is not causation!
This is a really important point because I’ve seen so many posts in my community where people have assumed the opposite, e.g. “I have this disease, or this experience and I also have a NET so there must be a connection”. Also, I see patients get excited when they discover similarities between half a dozen NET patients without investigating incidence data or other statistics including the fact that 6 patients out of the millions across the world does not equal causation. I cannot stop people making these connections but it can be highly misleading.
So, what do the terms correlation and causation mean? This is a highly technical subject so will try to keep it simple.
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- Correlation is a statistical measure (expressed as a number) that describes the size and direction of a relationship between two or more variables. A correlation between variables, however, does not automatically mean that the change in one variable is the cause of the change in the values of the other variable. One practical example would be an increase or decrease in the incidence data for (say) diabetes would not necessarily mean there should be a corresponding increase or decrease in the incidence rate for Neuroendocrine Cancer.
- Causation indicates that one event is the result of the occurrence of the other event, i.e. there is a causal relationship between the two events. This is also referred to as cause and effect. Note my blog below to see that there are coincidences and confounding factors.
To illustrate the important, see this real-world example 1: Ice Cream Sales & Shark AttacksIf we collect data for monthly ice cream sales and monthly shark attacks around the United States each year, we would find that the two variables are highly correlated.
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Eating ice cream does not cause shark attacks!
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Read my correlation blog entitled The 4 Cs – click here or on the graphic below
Summary
I often think about what actually caused my NET, but I no longer worry about what the answer might be. I’m the first to admit I could have led a healthier life (like many others) but even that may not have had any impact or involvement in my cancer diagnosis. There doesn’t seem to be any point worrying because the clock cannot be turned back …..even if I knew, I would still have metastatic NETs, I still wouldn’t have the resected pieces of my anatomy.
My advice is to let your thoughts of when and how it started go. Worrying is just wasted energy. You will never know for sure and it most likely won’t change any treatment. Focus instead on staying well and enjoying life.
However, if the cause of my cancer was connected to a hereditary condition, clearly this would be important to know. However, when I study my own type, small intestine NETs, I can see the risk of a hereditary link is very small for me – you need to do your own research. This link might help with that research.
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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I make no generalization from my experience but I find myself within a smaller percentage of men in my ( then) age cohort who had taken metformin for diabetes for a period of roughly 3 years. ( and I did have an attack of pancreatitis in that period.)
Metformin has already been linked to acute pancreatitis in some cases, so I guess that’s the probable connection?