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. 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 NET 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:
- Be careful surfing the internet, some sites have NETs prognostic data from the ark.
- 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.
- It’s a difficult question even for a specialist.
- 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.
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.
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