NED vs Remission vs Cure

I’ve lost count of the conversations I’ve had about what my current ‘status’ is ? These conversations normally start with the question, “so, are you cured now?”

My doctors describe my situation as ‘no evidence of disease’ (NED). This means that the signs and symptoms of my cancer are no longer evident in any testing. It would be naive to call this a cure. It’s very possible, in fact more likely than not given the level of spread in my case, that cancer cells continue to exist in my body at a level which current testing methods cannot detect. It’s also likely that these cells will eventually lead to a recurrence event - a new tumour.  Based on published survival curves - and notwithstanding the limits of this data, which I’ve written about before - there is a circa 85% chance of such a recurrence event in my case.

Most recurrence happens within 3 years post first-line treatment. I’m not yet one year out from 1st line treatment, and I’m very nervous about the next scan coming up in December. Of course, with every clear scan the odds of recurrence recede and by 5 years after diagnosis, few relapses are seen. My obvious goal is to make it to 5 years without recurrence.

Many friends and colleagues have asked if I am in remission. Yes, is the short answer. I am in complete remission (partial remission is another term that gets used). I think the medical community, certainly my treatment teams, prefer to use the term ‘no evidence of disease’ these days, because it more accurately describes the situation i.e. not a definite cure, but simply no evidence of cancer that can be detected by current testing.

NED & Ambition

Non-Cancer Project Update: Record a song for my kids