Translate
Subscribe to Blog via Email
Ronny Allan
OPINION. 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 causation (see below what this means), 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.
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:
- 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, or Zollinger-Ellison syndrome. Read this post about proton pump inhibitors – click here
- Smoking tobacco (e.g. Small Cell Lung Cancer (SCLC)).
- long term exposure to sunlight increases your risk of getting Merkel Cell Carcinoma (a type of Neuroendocrine Carcinoma of the skin)
- A family history of:
Risk factors are just risk factors and they do not mean these risks will always materialise into a NET. Many people claim environment and diet are a cause of NETs but there just isn’t currently any evidence to support that. However, one interesting find is a study funded by NET Research Foundation which is designed to discover the molecular causes of a Small Intestine NET (SiNET). In addition, they will investigate potential environmental causes, including epigenomic and infectious causes.
I also found one risk factor study in April 2020 which looked at “Early life exposures associated with risk of small intestinal neuroendocrine tumors”, James VanDerslice, Marissa C. Taddie, Karen Curtin, Caroline Miller, Zhe Yu, Rachael Hemmert, Lisa A. Cannon-Albright, Deborah W. Neklason. Published: April 23, 2020 https://doi.org/10.1371/journal.pone.0231991
This is a study based on the Utah Cancer Registry. Their conclusion is interesting and is as follows:
Using cases and birth cohort controls, we report geographic clustering of a birth locale associated with greater than 2-fold elevated risk of SINT, located central to historic coal mining communities. A retrospective analysis of industry and mining exposures further suggest birth/early life residence near construction industry, uranium mining and coal mining confers an elevated risk, specifically during the earliest time period when there were no regulations to reduce exposures to workers or the public.
Note: These are elevated risk factors, not a scientifically confirmed cause of SI NETs.
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). So, what do the terms correlation and causation mean? This is a highly technical subject so will try to keep it simple.
- 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.
To illustrate the important, see this real-world example 1: Ice Cream Sales & Shark Attacks
If 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.
Eating ice cream does not cause shark attacks!
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.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
A Review of April 2024 on RonnyAllan.NET
Here is the monthly summary of what we all achieved in April 2024. Something new, something blue and some borrowed too! Every share helps someone
I’m only as good as my last scan
“I’m only as good as my last scan”. I once received this comment in response to one of my posts. I thought it was a
Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)
On 29th April 2014, I release my first post entitled “What’s it all about” i.e. why on earth am I writing a blog! It was
Neuroendocrine – what’s that?
I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my
The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?
But it works, I read it on the internet! “But it works… I read it on the internet!” You may remember my article entitled The
‘Chinese Dumplings’ and Neuroendocrine Cancer
Update of one of my posts from 2015 which was interesting in that year. This is not really about a treatment which is available everywhere
“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs
Every day is a learning day in NET! When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help
Chemotherapy for Neuroendocrine Cancer
Edited and checked April 2024 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a ‘standard of care’
Carcinoid vs Neuroendocrine
OPINION – There’s a constant debate regarding the validity of the term ‘Carcinoid‘. I’ve posted about this a few times and as far as I
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)