Let’s talk about living with NETs

Graphic courtesy of Ellie McDowell

There’s a frequently asked question on certain forums along the lines of how will I die of my Neuroendocrine 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 can see a list of search terms for hits on my blog site (I don’t know who searched just what was searched). Would you believe this also appears from time to time.  I just hope they found this post!

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, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these 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. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)

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

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

Thanks for reading

Ronny – 8 years and still a newbie

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Author: Ronny Allan

Facebook: https://m.facebook.com/NETCancerBlog and https://m.facebook.com/RonnyAllanBlog twitter: @ronnyallan1 twitter: @netcancerblog

15 thoughts on “Let’s talk about living with NETs”

  1. On Eric Liu’s Zebra web site I asked not to use the site as Obituary not just she the organizer did not agree she removed me from the site. We do not need this type news we are looking for hope.

    1. a bit harsh. On another group I’m in, they have a group file which people can add to. Pragmatic because it means the timeline is kept free and if anyone is interested, they can read the group file.

  2. 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….

    1. Hi Ronny, it has been nearly a year and a half since you first posted this piece. Like you I am still going strong. Today remains the best day. I’m not afraid to die one day. But not this day. I’m too busy living , giving, loving, wandering and wondering…. big hugs Ronny and keep up the great work you do to spread knowledge and inspiration. You make a difference to the world.

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

  4. 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

  5. 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

    1. 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.

  6. 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.

  7. 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.

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