Well, technically I was NED according to CT scan after surgery, since all observed masses including enlarged lymph nodes PLUS a liver met that didn't even show on the scan were removed, but I don't think any of us thought I was NED. We assumed that we were dealing with remaining microscopic disease, which was why I was on FOLFOX as adjuvant therapy. Even when the July and November CT scans were clean my onc and I didn't take that as evidence of NED, given the first invisible liver met. "Cautiously optimistic" was the way he assessed it. If my liver MRI had been clean, then I think we would have said NED, but of course it wasn't.
So I am inclined to think that someone can realistically start thinking of themselves as NED or "in remission" from the point that *truly effective* scanning targeted at their likely met sites says they are. I'm inclined to think that PET and CT aren't good enough, because they don't pick up the small stuff.
Of course, I am thinking mostly of stage 3 and 4. Things would be different for a person with Stage 1 or 2 post surgery with clean margins.
Of course, this is just my opinion, and if it helps people to think of themselves as NED on less evidence than I personally requires at this point, that is totally up to them.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable