NED..?

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kks_rd
kks_rd Member Posts: 363
edited June 2014 in Life After Breast Cancer

I don't know where this post really belongs, but I do know I need to bounce this off people who will understand.

I finished treatment about six weeks ago, and had my first follow-up with one of the ROs earlier this week.  He wasn't my usual person but a doc that I had seen at least once before.  Was talked a lot about my "surveillance" plan - what imaging I should have when, how many follow-ups per year, etc.  First of all what he told me was totally different than what my BS had prepared me for - less aggressive monitoring.  I called the RO on it... I was diagnosed at age 32, triple negative, BRCA1+... why on earth would he want me on annual mammograms only?  (He did agree to consult with my BS, and later called to let me know they would follow the surveillance plan BS recommended. Phew!)

But that's not the most disturbing part.  I asked him when I could consider myself more or less NED... I was so anxious during this appointment I don't remember what I said exactly, but I forgot to term NED.  Instead I mistakenly said "in remission" or "cancer-free" or some other erroneous term.  So he went into this long explanation about "we can't ever really say you're cured" and "there are no guarantees that you are cancer-free"... okay, FINE.  I get it, you don't need to remind me of how uncertain life after really is.  Sorry I goofed on the term, jeez.  But, at the end of that belittling little diatribe, he did conclude that as of that visit, he considers me NED.  

You would have thought I'd jump for joy!  That's what I've been waiting for almost a year to hear!  But it was terribly dissatisfying, and I can't put my finger on why.  Is it because he only did a clinical breast exam, and I haven't yet had any imaging that "proves" it?  Or is it because the news was only delivered only after that 5-minute lecture on how nothing is really certain at all?  I feel like I've been denied the opportunity to feel any sense of victory.

Or is this how it feels for everyone?

Comments

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited March 2012

    Kat, I think our bodies get into the fight or flight mode and sometimes we feel an emotional letdown when active treatment is over.  That is what happened to me.  Give yourself time to process your NED and the good news it truly is.  Good luck with your mammogram.  One day at a time...

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2012

    I applaud your Dr for taking the time to be sure there wasn't another woman walk8ing around erroniously believing they were cured of cancer. If more Drs made sure that they were clear about being NED did not mean cured there would be a lot more women whare not devistated when they finally realise that what they thought they had head was not in fact the truth. Kudos to Dr 'Whoever' for taking the time to be sure you understood.

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