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.

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

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