Metastatic Neuroendocrine Tumours – incurable is not untreatable.
When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ….. I asked “how long do I have“. The Oncologist started off with the worst case and 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!
It’s widely accepted that stage 4 in general cancer terms gives it the label of ‘incurable’ (clearly there can be outliers as is normal with cancer scenarios). What is different in certain stage 4 cancers including well-differentiated NETs is that stage 4 is not the ‘red flag’ it is with more aggressive cancers.
There’s an emerging term in UK called “Incurable but treatable” – the inference is that it is manageable and similar to treating a chronic condition. Some people will have incurable but untreatable cancer from the moment they are diagnosed (i.e. stage 4). Others develop it if their cancer progresses or comes back (i.e. re-staging to stage 4). You may hear some of these cancers described as “advanced”. Sure, you eventually may die due to your incurable but treatable condition but that can also happen with a chronic condition.
While not curable, some of the cancers fitting into this category are generally considered treatable if treatments are available that could be used to slow the progression of cancer and help people to manage their symptoms. Advances in treatment and care mean people can now live for many years with “incurable but treatable” cancer. In some ways, it may at times feel like living with a long-term chronic condition.
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 “treatable but not curable” (I prefer “incurable but treatable” giving it a more positive spin). I believe this is very relevant to Neuroendocrine Cancer. I touched on this in an awareness blog entitled “Living with Neuroendocrine Cancer – it takes guts“. You will find some data in this blog about a major increase in the amount of people with cancer who eventually die of something else (…… basically it has doubled). For many, Cancer is no longer a death sentence. I do accept that it can be difficult to live with certain cancers and this is also covered in my “it takes guts” blog linked above.
I’m conscious there are legal ramifications with the definitions (wills, life insurance, disability etc) and that these may differ on an international/federal basis. I therefore 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.”
I’m sure it can, e.g. with very advanced and extremely aggressive disease and for any grade when considering the condition of the patient and other factors (secondary illnesses/comorbidities, refusal of treatment etc). Clearly, that is a terrible situation. I’m also conscious that some people do eventually die because of this disease or its consequences and that is also terrible.
I think with most Neuroendocrine Cancer patients, “how long do I have” can be a tough question to answer. 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 or anyone else had formulated my treatment plan ….. i.e. my case had not yet been looked at by a Multi-Disciplinary Team (MDT), a bit like a ‘Tumor Board’. I had already been confirmed Grade 2 (via liver biopsy) and my CT scans were indicating widespread disease (Stage IV). I was yet to have an Octreotide scan and the conventional biochemical markers (CgA and 5HIAA). 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 but without treatment. These statistics are certainly better when you get treatment, but my Oncologist was probably on the right track. However, at no time did he use the word ‘terminal’ because treatment was on his mind. In fact, it’s possible he was trying to say, “you may be incurable, but I can treat you”.
I continue to see quite a few posts and articles about death and dying and I noticed some patients were using the word ‘terminal‘ to describe Neuroendocrine Cancer, despite in some cases, having been diagnosed some years ago, despite in most cases in reference to well differentiated diagnoses. This label is not just confined to use within Facebook forums, I’ve also seen this on wider social media including twitter, blogs and newspaper items. For some, this appears to be the prognosis given to them by their doctors. I find this surprising. However, I’m 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 those worst-case prognostic statements, including the higher-grade cases. Oncologists don’t have crystal balls so even if they give a figure, it really is just a guess.
You can find numerous examples of long-term survivors of advanced Neuroendocrine Tumours on the ‘airwaves’, many with a relatively good quality of life (QoL). I don’t normally pay much attention to prognostic data, I take my lead from the huge number of patients living a long time with Neuroendocrine Cancer. There has been a plethora of new treatments coming online e.g. PRRT is making a difference for some. Many more are entering and progressing through the approvals pipeline. Also listen to a NET Expert along the same lines.
Because of the misleading awareness messages and badly moderated patient groups, some people seem to suggest that “incurable” applies to every single NET patient. This is very misleading and way out of context with accepted epidemiological data. The other worrying area is where people are suggesting that any stage IV diagnosis is ‘terminal’. While that may be the case for some, when you study the definitions in cancer circles you can quickly see thar the majority of low-grade high stage NETs are incurable but very treatable. The use of the word terminal out of context (see definitions above) could unnecessarily frighten people.
Read more about this issue by clicking here or on the picture below.
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. Mention of Stage IV can set off alarm bells and send the wrong message to the recipient. I don’t believe Stage IV has the same ‘red flag’ meaning for well-differentiated NETs as it does with more aggressive cancers of the same stage. Given what I know now, I would certainly challenge any doctor who told me I had a ‘terminal disease’ and at the same time told me I had a slow growing well differentiated Neuroendocrine Cancer.
I now live with this disease (….and its consequences) and do not feel like I’m dying of it. Moreover, I most certainly do not see myself as a ‘terminal’ cancer patient, particularly as I’ve now been living with it since 2010. I like to focus on how I can live better with it.
In fact, I’m not sick, I just have cancer is strangely how I feel.
Whilst we’re on this subject, please note Palliative Care is not just end of life / hospice care. It’s more than that. Read more here.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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