Help - How do you define remission and what truly is NED?

[Mary - Tierrasanta in San Diego]

Saw my onc briefly yesterday and he said he no longer has to see me every month. Used words in some combination that came across to me as "You beat this or it looks like you beat it." Questioned the 1 cm in left breast that showed up on last MRI and positive uptake on PET scan in same area. He did not seem concerned but seemed pleased that there was no other sign of BC or mets. Will continue on Herceptin in study. Is this remission or NED? Still a little afraid to mention either out loud. Maybe I am not there yet. How will I know?

[Sandy]

Hi Mary: That is wonderful news at least for now. We never know whats around the corner. When the doctors have told me I am doing very well I always seem, to go backwards and I don't like to hear it anymore. That is me. I always use to hear remission until my Dx. and now I hear NED which I think NED is for us with metatastic disease. I don't feel, for myself, I have ever been in remission but my tests have shown NED. I hope I have clarified this for you and will be interested to see what you get from others. Hugs, Sandy

[Lyn]

Good news, it is what we all like to hear. Now the off putting news you have to keep a vigilent eye on your body because no one knows it better than you. For the first 12 months you will still need regular CT's and check ups, then after 12 months less and so on, and don't let your onc tell you any different this is one disease you can't trust to be predictable. Stay positive and as my daughter keeps telling me enjoy every day, then she reminds me I have to stick around and get back some of the money I have invested in her music lessons, that will be a while, she plays violin,piano,drums and she has singing lessons, she is 14 and I have been battling this since 1998 and I am NED.

love & hugs Lyn

[Mary - Tierrasanta in San Diego]

Thanks for the info and the caution. Luckily I will be in study for the next 2 or 3 years so will get regular tests. Enjoy your daughter's music now and for many years to come!

[Mary - Tierrasanta in San Diego]

Thanks so much for the info. Hope you hear NED from your onc for many years. Good Luck!

[Lolly]

After I finished Navelbine, my onc said I was NED as all tests and scans showed no disease. After a year of Herceptin solo and still NED, I asked him if I could consider myself in remission and he said yes, but conditioned by the fact I'm still on Herceptin. So I think that technically speaking, you can be NED while still in treatment but to be in remission usually means NED with no treatment. Hope this helps,
hugs,
Lolly

[kathleen]

Remissions is remission--it means one thing--free from disease--you go girl--i am doing HIGH KICKS FOR YOU!!!!!!!!!!!!!!!!! oxoxox kathy

[jessica]

NED/Remission...it's music to the ears, regardless!I was told that NED is, ofcourse, No Evidence of Disease, and that can occur at any point w/full response to treatment.Remission is remaining NED over a long period of time.It seems to make sense.I'm blissfully NED for ~12weeks now, I don't use the term "remission"- at least not yet, but I plan to one day!
Take good care!
Jessica