When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell! The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused. “OK Doc – let’s go” I said. Always take someone with you to take notes at important meetings with Oncologists!
However, I now realise he was guessing because no-one really knows how long a person with Neuroendocrine Cancer will live. Sure, they can tell you averages from known data but that data is out of date as soon as it’s published. I did have a peek at some data I found shortly after that conversation and spotted a 5 year survival rate of 38% – that was also a shock. In those days I was naïve though, I hadn’t really appreciated the complexity behind survival data (and therefore how to read and interpret it) and more obviously, I hadn’t realised the data I was looking at, was really really old, predated most of the new treatments around today; and that it might be skewed by mixing low and high grade data. Nor did I appreciate the sheer number of factors involved in Neuroendocrine Cancer prognostics which can make ‘fortune telling’ a more complex task than many other cancers, e.g. grade, stage, primary location, functional/non-functional, age, cancer side effects, the patient’s pre-existing conditions, location, access to a specialist, healthcare system. Although I accept some of these factors are the same across the cancer board. Stage and Grade are interesting because with very aggressive cancers, stage can often be a real differentiator. With Neuroendocrine Cancer it can often be the opposite – grade can make a huge difference between a good and not so good prognostic outlook, i.e. with well differentiated low grade Neuroendocrine Tumours, Stage 4 is not the ‘red flag’ it is for more aggressive cancers.
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 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 that even the ‘very latest’ data is probably a few years old.
- It’s a difficult question even for a specialist.
- I’ve lost count of the number of people who have told their story about being given 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.
- Personally, I’ve given up paying any attention to prognostic data. Check out the comments from NET patients on this Facebook post – click here – this is the only thing I now pay attention to.
- Here’s a much better question people should be asking ……“How do I live with NETs?”
However, if you do take the plunge and pose this question to your Oncologist or Specialist, you may get a really woolly answer. I wouldn’t be too disappointed, they’re not fortune tellers – they simply don’t know and it can often be an expectation they don’t want to manage on your behalf.
The motiavtion (and the inspriation) to write this artilce comes from a tweet by well known NET Specialist Dr Pamela Kunz who indicated she doesn’t have a crystal ball (the exact words are on the tweet snapshot photo below). The story is proof that patients really want to help doctors do their job. The purchase of a crystal ball as a gift for Dr Kunz is quite amusing, inspiring and should lift the sprits of anyone reading.
I’m so pleased that Dr Kunz shared this story, it’s a great message for both doctors and patients to hear. I’m also grateful to Dr Kunz for allowing me to use her photo in the article.
Thanks for reading
Ronny – diagnosed 2010 and still a newbie