Ever wonder what caused your NET?

DNA strand and Cancer Cell

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 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 latest 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 for NETs

Not a lot is known about what causes neuroendocrine tumors, so there aren’t many strategies to prevent them. People with certain risk factors are at a higher risk of developing neuroendocrine tumors 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 acid, such as atrophic gastritis or pernicious anemia (e.g. Type 1 Gastric NETs), or Zollinger-Ellison syndrome (e.g. Type 2 Gastric NETs).
  • Smoking tobacco (e.g. Small Cell Lung Cancer (SCLC)).

Risk factors are just risk factors and they do not mean these risks will always materialise into a NET.  As for the remainder, will we ever know?  Perhaps one day but in my opinion, not anytime soon.  Many people claim environment and diet is a risk factor for NETs but there just isnt 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 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. However, if the cause of my cancer was connected to a heredity condition, clearly this would be important to know. That’s only my own opinion though.

Thanks for reading


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15 thoughts on “Ever wonder what caused your NET?

  • Kim

    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!

      • Kim Binks

        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.

  • Harry K

    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.

  • Deanna Vickery, Mrs

    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”. 🙂


  • WordNoid

    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.


    • Christine

      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.

  • Pat Risch

    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.


  • Donna Crompton

    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!


  • Deanna Vickery, Mrs

    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

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