No Evidence of Active Disease

A question we often get asked is “how can you be Stage 4 and also be NED or NEAD?” so we thought we’d help try and take away some of the confusion surrounding this topic. 

Firstly what is NED or NEAD. 

NED = No Evidence of Disease or NEAD is No Evidence of Active Disease. 

Stage 4 breast cancer is when the breast cancer cells have already spread to another part of the body - bones, lungs, liver or a combination and is incurable.  It can be treated but not cured.  Stage 4 patients rely entirely on their treatment working to keep the cancer under control.  Our scan results tell us how we are getting on and whether we are ‘stable’ or not. A 3 or 6 month cycle of life. 

And language is so important as the wrong wording used can create confusion and distress amongst the community.  We’ve heard the term ‘cancer-free’ in an SBC context which is difficult as it sends the wrong message.  We are stable, yes, but the cancer is still present.

NED or NEAD are the phrases we all hope to hear from our medical teams.  The Holy Grail of Stage 4 if you will.  No evidence of active disease is when the cancer treatment is working and the cancer cells are asleep or undetectable on a scan.  A really good place to be in the Stage 4 cancer world.  Speaking personally,  I've been NEAD for 4 years now meaning the Letrozole treatment is working well to contain the cancer cells to my bones - my scans even show signs of schlerotic bone (healing bone) which indicates a healing response to therapy - and as a result of this, I live relatively well with cancer.   One day I know this will change and the cancer will wake up and I’ll have to review my treatment options and move on to something else but for now I relish the NEAD status and do my best to live well while I can. 

Claire, member of the Make 2nds Count Community.