Has anyone been told they had "NED", then their cancer came back? If so, after how long? We are anticipating that my son's forthcoming operation will get rid of his tumour altogether, and so far there are no detectable signs of spread. But naturally we are worried that there might be microscopic "seeds" in his body that could start it all up again. His cancer is in the thymus gland, but that is such a rare cancer (1.5 people in a million get it in UK), that I post on here rather than in Thymus cancer forum. Even the oncologist says he rarely sees more than one a year. (This is in Royal United Hospital Bath, SW England)
Hi again Ma78
In simple terms NED means No Evident Disease….. I was diagnosed way back in 1999 with a 7 in a million type of incurable Non Hodgkins Lymphoma and was only ever in partial remission so never NED over my first 17 years with the longest period between treatments being 9 months….. but told NED on 19 September 2016 and remain in remission to this day.
The simple answer is that cancer can and does come back, and NED doesn’t mean you’re always going to be free of a recurrence. I was told NED in April 2019, but my cancer was back by October 2019. Microscopic cells not detectable on a scan grew again and were picked up in a routine check up.
But I was always told by my consultant that NED doesn’t mean cancer free, and that it could come back-it means there is no evidence of disease at the time of having the scan. I was told NED again in 2020 after surgery, but with the same proviso.
Sarah xx
