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Let’s talk about living with NETs

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Graphic courtesy of Ellie McDowall

There’s a frequently asked question on certain forums along the lines of how will I die of my Cancer?. Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.

I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find new data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have been told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. Check out the comments on this Facebook post – here

Here’s a much better question people should be asking ……How do I live with cancer?”

Thanks for reading

Ronny Allan (Living with Neuroendocrine Cancer)

Fear won’t stop you dying but it might just stop you living.

Hey Guys, I’m also active on Facebook.  Like my page for even more news.


My Diagnosis and Treatment History

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!



  1. Susan says:

    I agree Ronny. I live a great life with cancer every day. Yes some things have changed but I am enjoying life, family, friends and adventures all the more because today is the best day! Love everyone. Set your sails and just go….

    Liked by 1 person

  2. Xochi says:

    LOVE THIS Ronny!! And that IS the most important question, I believe, for EVERYONE! How ARE you living your life? (Cancer or not! !)

    Liked by 1 person

  3. Gaynor Miles says:

    I was recently told that I had a long way to go yet when I told a lady at a support meeting that I had been diagnosed 5 months ago, what did she mean by that do you think as I like Ronny am trying to lead a normal life and that comment left me feeling confused

    Liked by 1 person

  4. Gaynor Miles says:

    I was diagnosed around five months ago and when I was at a recent support meeting I was told by one patient that I had a lot to learn. CAn anyone enlighten me what she could have meant because like Ronny I try and lead a normal life

    Liked by 1 person

    • Ronny Allan says:

      Stick to my site, you’ll learn a lot 😀 There’s a lot of ‘stereotyping’ in the community but in real life, we all have different experiences and different ways of coping. In my own experience, a NET patient’s ‘time’ under the belt, doesn’t necessarily mean a superior way of coping.


  5. I have been on this journey for 13 and a half years and I am turning 60 this month. I am still working full time and people have told me that I do not even lot that old, so I figure that I am still enjoying life and when my life does end it will be of old age rather than the pancreatic neuroendocrine tumor with liver mets that I was diagonosed with.


  6. edebock says:

    I love the title! That’s exactly how I’ve chosen to live too.

    Liked by 1 person

  7. corinne Friedmann says:

    Two positive things I can say about my cancer is since I was diagnosed ,I m enjoying life twice as much! People say that I look radiant and I have lost weight because of my Sandostatine shots for about 9 months and now on Affinitor, food doesn’t taste good. And I don’t think about death. You can die from so many different things. Love and courage to everyone.

    Liked by 1 person

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