Let’s talk about living with NETs

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Opinion. There’s a frequently asked question on certain forums along the lines of how will I die of my Neuroendocrine Cancer?. I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don’t know who searched, just that this search term led to my site being viewed). I just hope they found this post! 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 and there are many who are in a vulnerable condition having just been diagnosed.

I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog that is partly 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 already frightened readers, 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.

being_there_front
Graphic courtesy of Ellie McDowell

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 the 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.  And that’s the average across all cancers, so for some cancers, the percentages may be higher, even much higher.  I believe low-grade Neuroendocrine Cancer would be an outlier in these statistics, particularly in non-metastatic cases.

The cancer story is changing, and a quick bit of research confirms it’s changing on a worldwide basis thanks to better diagnostic tools and new and improved therapies.

Heterogeneity of Neuroendocrine Neoplasms

Click to read

Another thing responders to this question forget – Neuroendocrine Neoplasms are a heterogeneous grouping of cancers ranging from very indolent and localised Tumours (NET) to highly aggressive poorly differentiated Carcinomas (NEC) – grade is a real differentiator. Add to that many prognostically significant factors including (but not limited to) effects of syndromes (most are non-functional), stage – many in particular locations are metastatic at diagnosis, age, existing comorbidities, access to specialists, access to latest diagnostics and therapies.  At Grade 3, the differentiation and Ki67 %age can also be a differentiator.  

There are more low-stage low-grade NET patients than you think, particularly appendiceal, gastric, and rectal cases. Sure, some of these patients will succumb to metastases but the majority of these patients will have a localised tumour removed and it will never bother them again in their lifetime. They don’t tend to join patient groups, at least not for the long term.  Even many late-stage patients will die with their disease, not because of it 

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 the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.  They don’t have Crystal Balls (except Dr Pamela Kunz – read here).
  4. I’ve lost count of the number of people who have told their story about being told a period of time by their specialist (including the 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 (hundreds of people like this post so far – so press that button!)
  6. Learn how to conquer your fear – click here

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

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 as they are not members of the private group or followers of my sites in any official capacity.  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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Ronny

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17 thoughts on “Let’s talk about living with NETs

  • Elizabeth Marshall

    I was diagnosed nearly two years ago, and initially thought that might be the end of the trail for me. However, I have 5 beautiful grandchildren who need me in their lives, a husband who is absolutely wonderful, friends who make sure my days are full of chat and coffee. How can I possibly have the time to shuffle off!!!

  • Ozzie

    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.

  • Susan

    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….

    • Susan

      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.

  • Xochi

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

  • 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

  • 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

    • 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.

  • 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.

  • corinne Friedmann

    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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