An opinion post

Cure

I once wrote an article called “Neuroendocrine Cancer – can it be cured“.  In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be.  At the other end of the scale, I covered guidelines where doctors talk about removing tumours with “curative intent”, clearly in reference to small localized tumour scenarios. I’m pretty sure in my own mind that this does happen.  As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing “no follow up” related to size and margin pathology score.  However, in one sentence, “cure” generally means that there are no traces of your cancer after treatment and cancer will never come back.  That’s a pretty big statement that seems impossible to predict in every single cancer patient.  I guess doctors tread carefully before saying the word ‘cured‘.  Epidemiology data plays a big part in decisions on how to guide doctors and manage patient expectations, i.e. based on the data collected over a period of years, doctors are able to assess the likelihood of a recurrence (as inferred above). For some doctors, I suspect they also base this on what they see in their own practices, at least in the larger hospitals seeing hundreds or thousands of patients over a period of time.  When I read comments from members of my patient group, the lack of a standard is obvious.  Words such as “stable“, “no evidence of disease” and “cancer free” are frequently used. Less quoted are terms such as “remission” or “cured“.  I myself am “reassuringly stable” but with “evidence of disease“. 

Other than the general cancer definitions I’ve quoted below, there is no real standard for what a doctor should say to a patient at relevant points in their surveillance in terms of the future, this really is not an exact science. I believe it has to be understood that this is really pretty much the way things are and thus why words need to be carefully thought through before being uttered. To a patient, these words are really important, as is the context in which they are said.

For some in the Neuroendocrine patient community, this is both a controversial and emotional subject, understandably so.  However, it is not helped by the ‘blanket statements’ continually made about all types of Neuroendocrine Cancer (Neoplasms) when they only really apply to a subset. Neuroendocrine Neoplasms are a heterogenous collection of cancers and this heterogeneity applies in various other ways, not just in the classification of the disease.

I think it’s worth including this definition as it overlaps with the remission definitions.  Some cancer cells can remain unnoticed in the body for years after treatment. If cancer returns after it has been in remission, it’s called a “recurrence.” Cancer can recur in the same place it was originally diagnosed, or it can recur in a different part of the body. It’s normal to be concerned that this will happen to you. Every situation is different, and there’s no way to predict what will happen.