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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.
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My primary was on my “horseshoe” kidney. In researching kidney anomalies I came across fetal alcohol syndrome and it’s effect on the kidneys in the first trimester. I’m sure my mother drank while pregnant back in the day and possibly to excess as she was an alcoholic in later life.
It doesn’t matter or change the facts. Just a curious thing I found in my research. Thankfully Mom had passed 5 years before I was diagnosed and I didn’t have to tell her I had cancer.
sorry to hear about your mom x
This is the first time I’ve written a comment. It’s a very lonely place being diagnosed with a neuroendocrine tumour.
I have a private Facebook group full of patients who share your experience and are happy to talk to others.
https://www.facebook.com/groups/RonnyAllan.NeuroendocrineCancer/
I have a pNet, and my father, paternal grandmother and my mother all dies of pancreatic cancer. Whilst I know mine is totally different, it is because I am on the Europac research program, that is trying to identify the faulty gene that causes Pancreatic cancer, that I was diagnosed. As mine is pancreatic, I find it hard to believe there is not any correlation.
Clearly there must be an issue with our pancreas. That said, as I am third generation pancreatic issue, I do believe my mothers was, to quote my surgeon, sporadic.
However that said, now I am second generation from her, it maybe that she was the start of the letter be on my maternal,side. It has to start somewhere.
Moreover, it is my children I fear for. They have it coming from both sides it would appear, if it proves we do hav3 a faulty gene! And we must have as it would be incalculable the chances of us all being sporadic cases!
Maybe your relatives had pNETs. As we know, doctors have a habit of calling it pancreatic cancer. Could you get their biopsy results?
I haven’t seen their results however the Europac team have been in contact with the relevant hospitals and also have my fathers death cert. all confirm Pancreatic Adenocacinomas. And when they gave me my diagnosis they confirmed this as a reassurance that I wouldn’t be going anywhere in the next few months, or weeks as was in my dads case.
Just wanted to thank you Ronny! I’m sorry we have this in common and I’m glad you’re in my corner!
I am a 34 year old asian male that was first diagnosed 2 years ago at age 32. I was living a somewhat healthy lifestyle, and it still puzzles me today how I even have cancer at such a young age……. its alarming and scary. I have minimal history of cancer in my family but there seems to be some unlucky genes on my mothers side of the family. My uncle passed away 3 years ago from ALS, another uncle 30 years ago via leukemia, my father passed away when I was 16 via heart attack caused by chronic smoking. The doctors seem to be puzzled as they couldn’t do genetic testing on my cancer.
I seriously think there may be a MEN variation yet to be discovered. I was tested a few years ago for MEN1 which wasn’t positive.
However I remember my mother having late-onset asthma after giving birth to my brother when in her mid-thirties. In the 1950s this was ‘middle-age’ and only ‘accidents’ happened then. As well as the asthma (and there were no inhalers at the onset, the GP put her on phenobarbitone! Later she had one huge pump but I don’t know what was in it. together with (what she called) palpitations. All unexplained and not investigated.
Looking into family-histories – as told by the children (now adults) is the next way-forward.
People overlook some of the things that I think may have something to do with our cancer. It is Neuro-Endocrine cancer. So much of what we eat is packed in plastic and these plastics leak compounds similar to estrogen into the food and water. This has been linked to cancer in studies. BPA is the worst but it seems all plastics do it. These chemicals are also labeled endocrine disruptors. I wouldn’t be surprised if this has something to do with it. In our house, we avoid plastics. David’s health is more important to us than convenience to us. We take the attitude of “better safe than sorry”. 🙂
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I am the second rare GI cancer in 2 generations, and the specific GI cancer that killed my father was a puzzle even on autopsy, so one of the first things I did was go through genetic testing to rule out anything known, which in NET world means MEN. As a result, I now know that MEN is not the cause. But that’s all I know. I have been trying to uncover family medical histories in search of anything familial; it is tough at a historical distance and even tougher because my father was an emigrant to the US from the UK. I would really love to hear from anyone who has done this kind of family tracing for medical reasons in the UK.
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Not just MEN, read my latest post, might bring up something. Might also be a coincidence?
In my family history books there are many death certificate copies. I was surprised to see on my Dad’s side there were several that stated the cause of death being intestinal blockage or cancerous tumors in digestive organs.
I remember that day well. As first they didn’t find nothing until they did a CD scan. February 5th 2007 I was at work and I hear my gastro doctor telling me I ha!d a 8.3 cm mass on the tail of my pancreas. All I thought was I have the true pancreatic cancer. Crying, my daughter came took me to his office. He explain it can be cancer, ore cancer or no cancer. I had to wait for the next step, trying to do a biopsy..which is hard to get to. The test showed no cancer, but I couldn’t get this out of my mind. They told me no matter what it had to be removed… So I found a great oncologist surgeon. We did the surgery, because they keep you comfortable, I didn’t even ask. The third day he came in and said it was cancer, but the good cancer meaning NETS, slow growing. I had to go home feeling so alone, down, and not understanding none of this. I’ve gone through fighting MRSA! Which a!bout killed me, but after three months, I felt I needed to look all this up. One thing googling they have to many sites that explained wrong info. Always ask your doctor for info. I’m going into my 11th year just now starting latitude shots. I have good days, and bad, but I’m still alive fighting this cancer. You will go through hard times trying to figure out why me. Always stay in tough will your doctors, if you need anxiety or depression meds ask for them, also when you have pain ask. Stay busy, if you don’t feel great take a nap, go for walks. I hope one day they find a cure.
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No doubt our immune system is an important part of this equation. Many things can lead to the weakening of your immune system. Environmental, Diet (food additives, pesticides, GMOs and lack of nutrients due to our highly processed diet), food allergies and intolerances, stress and over use of antibiotics. I may never know what caused my NET but I guarantee you I make every effort to eat an organic, non GMO diet, and a regular routine of cleansing my body of toxins, limit stressful situations and just enjoy life. It is also important to find natural alternatives to the many products we put on her skin and in our body. Our skin is the largest organ and every cosmetic, lotion and medication you put on it is absorbed in the body. I also use a good water filter to eliminate the pesticides and contaminants in the water. Ironically for many years I have been eating a lot of berries every day in my smoothie in they were not organic until recently. By doing so, I was consuming a lot of pesticides. So do your research and Buy organic when you can. So my advice is to eat a lot of fresh fruits and vegetables if you can tolerate them, organic when possible, take probiotics daily and save refined sugars for special occasions. We are what we eat!
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This interests me. In today’s world I think we will see more NETs in the general population due to chemicals related to food-production. For myself, I do wonder about my mother’s asthma which suddenly started after having my brother later in life; is there a common link……. I also wonder about a job I had in the ’60s as a research lab.technician. We prepared and cut brain tissue, which involved fixing with formaldehyde. Back then there was no protective gear, no masks etc, just a white lab-coat. Mmmm….
I know I inherited a gene mutation that causes cancer. My father and his sister both died of paraganglioma. Dad at age 45 while Head of Publications and Foreign Relations at Walt Disney Studios. His sister a few years later. There is a researcher, Dr. Baysal, whom I was talking with yesterday who discovered the SDHD mutation in people who lived at high altitudes. He thinks the lack of oxygen is a contributor to tumors. My father flew in airplanes in the 1960s six months of the year to conferences around the world. Other conditions where oxygen might be low is what happens where I live. We have wildfires that surround us and our air quality is “hazardous” for at least one month a summer. I also think a trigger for SDHB inherited patients is mold/aflatoxins. Right before I developed my first tumor I’d spent a lot of time over five years visiting my daughter in college in a house I rented for her that was full of mold. This Spring I found black mold growing inside our graphics studio where I’ve worked for 35 years with my husband. It has now been rebuilt but these exposures can take a toll. I’ve read more than one research paper that 3-NPs take out, are suicide, to SDHB alleles. I’m nine years into disease with no cure in sight. I opt for surgery every 2.5 years. I also email all the SDHB researchers I hear about in the world with questions. Thus created my own website for others with inherited SDH cancers. http://www.SDHcancer.org
Both my father and paternal grandfather had bowel cancer, which begs the question of hereditary, I guess out of the four of us I drew the short straw, but the fact that I am the youngest has been harder on my siblings than me I think. It wasn’t the diagnosis I wanted, but I was relieved to know my symptoms were real.
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