When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ..... 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.   The really important bit I missed was him saying "...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!

In the last few months, I've noticed quite a few posts and articles about death and I noticed some patients using the word 'terminal' to describe Neuroendocrine Cancer despite having been diagnosed some time ago. I witnessed this on the wider social media including forums, twitter, blogs and newspaper items.  However, I was much less surprised to see many comments on forums from people who had been told the worst by their doctors but were still alive and kicking WAY beyond these worst case prognostic statements.

What does 'terminal cancer' mean?  I'm conscious there are legal ramifications with the definitions (wills, life insurance etc) and that these may differ on an international/federal basis.  I'm not focussed on that and the aim of this element of the post is to discuss the medical/patient aspect.  I intentionally confined my searching to a couple of 'big hitter' and 'authoritative' sites:

Cancer Research UK defines terminal as "When cancer is described as terminal it means that it cannot be cured and is likely to cause death within a limited period of time. The amount of time is difficult to predict but it could be weeks to several months".

The American Cancer Society defines terminal as "an irreversible condition (it cannot be cured) that in the near future will result in death or a state of permanent unconsciousness from which you are unlikely to recover. In most states, a terminal illness is legally defined as one in which the patient will die “shortly” whether or not medical treatment is given."

Can terminal be applied to Neuroendocrine Cancer?   I'm sure it can, e.g. with very advanced and very aggressive disease and also taking into account the condition of the patient and other factors (comorbidities, refusal of treatment etc). Clearly that is a terrible situation.  

However, I suspect with most Neuroendocrine Cancer patients, "how long do I have" can still be a tough question. Thinking back to my own situation, although it was an obvious question to ask my Oncologist, I can see it might have caught him unawares.  I suspect he was erring on the side of caution as I don't believe he had formulated my treatment plan (..... my case had not yet been looked at by an MDT).  I had already been confirmed Grade 2 (via liver biopsy) and my CT scans were indicating widespread disease.  It was probably still too early as I was yet to have an Octreotide scan and the conventional biochemical markers.  I suspect, faced with my question, he went for the worst case, based on the statistics he had access to at the time. What I now know is that, in the year of my diagnosis, the median survival was 33 months in patients with advanced Grade 1/Grade 2 NETs with distant metastasis.  These statistics are almost certainly better today but my Oncologist was probably on the right track.  However, at no time did he use the word 'terminal'.  Given what I know now, I would certainly challenge any doctor who told me I had a terminal disease and also told me I had a low-grade/slow-growing well differentiated Neuroendocrine Cancer.

What I also found during my research is that as more and more people in the UK are now living with cancer (all cancer) rather than dying from it, there is a new class of patients emerging - Macmillan UK call this "incurable but treatable".  I will blog more about this later.

Positive thinking is required.  You can find numerous examples of long-term survivors of advanced Neuroendocrine Tumours on the 'airwaves' and many with relatively good quality of life (QoL).  Additionally you can find more positive survival rates for NETs out there.  I don't normally pay much attention to prognostic data, but I was particularly interested to read a set of statistics from NOLA (Boudreaux, Woltering et al) which said "Our survival of stage IV midgut NET patients that we performed surgical debulking on was published in the Journal of the American College of Surgeons in 2014. It showed our 5, 10 and 20 year survival rates were 87%, 77% & 41% respectively."  It's also worth noting the comparison with the 2004 SEER database analysis which listed the 5 & 10 year SEER survival at 54% and 30% respectively.  Clearly the NOLA figures are guideline (and only for midgut) but they do seem to reflect my previous statement about what can be found on the airwaves.

Exciting times ahead. Recently, there's been a plethora of new treatments coming online and more entering and progressing through the approvals pipeline.  The announcement this week of a clinical trial for the Oncolytic Virus (an Immunotherapy treatment) specifically for Neuroendocrine Tumours is also excellent news as we begin 2016 - read about that by clicking here.

My summary.  Following my diagnosis in 2010, I went on to receive really good treatment and it continues to this day with Lanreotide backed up by a rigorous surveillance regime (and this is backed up by my own advocacy!).  However, I have totally accepted the fact that I have metastatic Neuroendocrine Cancer and that it cannot be cured.  By the way, I intentionally used 'metastatic' rather than Stage IV as I don't believe Stage IV has the same 'red flag' meaning for low-grade NETs as it does with more aggressive cancers of the same stage.

I live with this disease (....and it's consequences) and do not feel like I'm dying of it.  Moreover, I most certainly do not see myself as a 'terminal' cancer patient.  Rather, I like to focus on how I can live better with it.

Thanks for reading

Ronny Allan

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My Diagnosis and Treatment History