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 Sure, they can tell you averages from known data but that data is out of date as soon as it’s published.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, access to a specialist, access to latest therapy, 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