When can we say dancing with NED

tommaseena
tommaseena Member Posts: 1,769
edited March 2014 in Breast Cancer #1
When can we say dancing with NED?
That is my question.
If I am in Herceptin treatment until the end of August 2010 is that when I am dancing with NED or do the doctors have to do more tests?

Do I have to wait until the doctor says NED?

Margo

Comments

  • LadyParvati
    LadyParvati Member Posts: 328
    #2
    Dancing with NED
    Here's the first paragraph from an article posted at http://www.post-gazette.com/healthscience/20020903hovarian0903p1.asp that helped me understand the phrase, "dancing with NED":

    "Every cancer survivor covets a long, slow dance with NED.

    NED is medical shorthand for No Existing Disease and it's the sweetest music a cancer patient can hear. Dancing with NED is the feeling of renewed vigor after months of chemotherapy-induced nausea and fatigue. It's the feel of the wind in a new growth of hair and a spring in feet that were once numb."

    If you decide to read the article, be warned that it is a little scary, as it is about the challenges of ovarian cancer, which has a high recurrence rate. It's really only the first paragraph quoted above that really defines "dancing with NED," so you don't have to follow the link if you don't want to do so.

    I'm glad I followed the link, though, because now I know why Jeanne & others have used the phrase and why they are so excited--and I feel that same hope you are feeling to hear the doctors make an official pronouncement that we each have NED in our lives!

    Hugs, Sandy
  • fauxma
    fauxma Member Posts: 3,577 Member
    #3
    For me I feel that I was
    For me I feel that I was dancing with NED since I had my surgery. The radiation was to take care of any possible lingering cells. I do get more excited when I have a check up and the doctor says all looks good or after my 1st mammo and it was good. But until they tell me that they found something bad, I am in the arms of NED. I love long lingering dances. It's more like a musical. I think it is really personal how you wish to look at it. And for all of us, the visits with our team and them saying they see No Evidence of Disease is the high mark and when we share our good news. I think that herceptin is like the arimidex and tamoxifen etc that some of us take. It isn't fighting the cancer you had but works to supress hormones etc that could feed a cancer recurrence. But if I am wrong I know that many will chime in and correct me.
    Stef
  • LadyParvati
    LadyParvati Member Posts: 328
    #4
    fauxma said:

    For me I feel that I was
    For me I feel that I was dancing with NED since I had my surgery. The radiation was to take care of any possible lingering cells. I do get more excited when I have a check up and the doctor says all looks good or after my 1st mammo and it was good. But until they tell me that they found something bad, I am in the arms of NED. I love long lingering dances. It's more like a musical. I think it is really personal how you wish to look at it. And for all of us, the visits with our team and them saying they see No Evidence of Disease is the high mark and when we share our good news. I think that herceptin is like the arimidex and tamoxifen etc that some of us take. It isn't fighting the cancer you had but works to supress hormones etc that could feed a cancer recurrence. But if I am wrong I know that many will chime in and correct me.
    Stef

    I'm glad you're dancing with NED!
    I'm so glad that having the surgery made you feel that NED is in your life, Stef! I wish that I felt the same way; guess I'm a little paranoid about free-floating cancer cells. I look forward to getting the rads & chemo done so that I can feel that I'm dancing with NED, too!

    Sandy
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #5
    dancing with Ned
    Margo, I was told by my surgeon right after surgery that he got it all. That is the first dance with NED. Each step you take after that (chemo, rads, Arimidex for me), justs keeps NED on your dance card. They make sure there were no stray cells waiting to pounce and they keep your body from allowing more to come into being. We celebrate everytime we get another check-up and the docs tell us again that we are "clean", but in my opinion, we are dancing with NED the moment the beast is removed from the bod!
    So continue your dance, and celebrate again each time you hear those magical words!
    Cat
  • chenheart
    chenheart Member Posts: 5,159
    #6
    Dancing with NED is, I
    Dancing with NED is, I think, rather subjective~akin to when we consider ourselves survivors! Some say they were survivors the day of diagnosis, others when they woke up from surgery, others when they completed chemo~ well, you get the idea!

    I said I was dancing with NED following my first check up after I finished radiation...but that was just me! I had to take Arimidex for 5 years after that...no way I was not turning up the volume on NED's favorite tunes and dancing around the room during that time! I have been dancing for 6 years, and not one blister on even my baby toe!

    Hugs,
    Chen♥
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #7
    chenheart said:

    Dancing with NED is, I
    Dancing with NED is, I think, rather subjective~akin to when we consider ourselves survivors! Some say they were survivors the day of diagnosis, others when they woke up from surgery, others when they completed chemo~ well, you get the idea!

    I said I was dancing with NED following my first check up after I finished radiation...but that was just me! I had to take Arimidex for 5 years after that...no way I was not turning up the volume on NED's favorite tunes and dancing around the room during that time! I have been dancing for 6 years, and not one blister on even my baby toe!

    Hugs,
    Chen♥

    NED?
    Dear Margo:

    I agree (as usual) with Kindred Spirit - NED status is subject to one's own interpretation, along with the opinions of our own physicians. And, again - as Claudia described, I personally didn't feel/think that NED was "with me" until I had completed all invasive treatment (surgery/chemo/rads). The Tamoxifen/Arimidex that followed and still continues - along with regular follow-up appointments, exams and various tests - is to keep NED close, and the beast far away...

    Kind regards, Susan

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