Hi, I do see 2 oncologists and an ENT regularly, and I never heard of NED before today. I agree about using language that people understand.
I have multiple scans each year-see an oncology dermatologist 4 times a year, my ENT to see if he can find any sign of the cancer coming back up inside my nose or a secondary cancer in between scans, and they just don't say NED. I just don't want to explain things, and with part of my nose and mouth being gone, I don't want more questions -I don't really want any questions. Like my son said--A visible cancer is really different than being able to cover it up with your clothes.
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October 2014