Remission vs NED, how to explain?

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dianetavegia
dianetavegia Member Posts: 1,942 Member
edited March 2014 in Colorectal Cancer #1
I've had two people this week ask me if I am 'in remission'. Both are highly educated people and I don't want to offend.

Since I was Stage III and all cancer was removed during surgery, I am NOT in remission. Remission loosely means 'no disease activity of a chronic, incurable condition'.

Have you found a way to explain NED without a long explanation?

Also, I've had several people ask me 'When will you know if they got it all?' In each instance, I had less than a minute to answer these questions before activities or services began.

Today I quickly said that remission doesn't refer to my level of disease and that I have no evidence of disease, that it was all removed during surgery.

Do you have a better way to answer? Will everyone always think of me as 'she has cancer!'? HAD people! HAD!

Diane

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  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
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    Interesting Diane
    I think people without Cancer have their own sets of ideas from the few words that they have heard...I think Remission is probably one of those words...NED is the other one...people don't know what that means either.

    The people who don't know you well may always think of you as having Cancer - they have not walked in your shoes on your journey - so they don't know any better.

    I think you are telling it right - just tell them there is no evidence of disease and you're in good shape :)

    You know that you are NED - we just have to understand that people without cancer have different levels of understanding and that it's an unknown thing to them.

    It's OK - you know you are NED, and that's what matters...you will always be Diane.

    -Craig
  • lesvanb
    lesvanb Member Posts: 905
    #3
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    Ah yes, answering The Question
    sigh...In my compassionate moments, I remember that people who are not dealing with cancer very intimately often ask questions which say more about their state of mind then wanting to know about yours, and that this does NOT mean that they don't care, don't love you, don't wish you well, etc. It's just that saying the C word is a heavy thing in our society 'cause there's more than just one kind of cancer, and it can be very unpredictable despite medicine's best efforts. There was just an article in the NY times about how they have to train docs to give bad news to people and that telling people that they have cancer is one of the most difficult.

    I'm not answering your question directly since I don't really have a pat answer other than to tell people I'm doing fine, which is the truth. If they want to continue the discussion, which most people don't, then I can get into the finer points of my condition.

    Regarding remission, NED, cured, I've noticed in my reading that there are many uses of these terms, some interchangeable. I don't worry too much about trying to describe those definitions to people other than ones who really want to discuss them–which most often are other folks on this board :-).


    all the best, Leslie
  • PGLGreg
    PGLGreg Member Posts: 731
    #4
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    NED = in remission
    None of my doctors has used either the term "NED" or "in remission" for my status in talking to me (though I think I am NED), so I can't add any evidence from personal experience, but in googling references, as best I can make out, they mean the same. Possibly "remission" is somewhat out of fashion. So I think that if you're asked whether you're in remission, it would be reasonable to answer "yes". And if you want to avoid the implication that the cancer might recur, just add that you don't expect it to recur.
    --Greg
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #5
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    Hi Diane,honestly
    Hi Diane,honestly speaking,my understanding for"remission" is the same as "NED",if I am wrong,sorry.I also agree with Craig,people never dealed with this "ca" thing really have very limited knowledge about it.I was a typical example before my hubby got diagnosed,although I am well educated,but since I was not at medical major,I really knew very little about cancer.Before, I thought all the cancer was the same,I even didn't know cancer is staged(sigh).So please don't think differently of people because they don't know,you can use yourself as a very good example to educate people who don't know.So this way people will know more and understand more,and they miunderstand less and have less unknown.Thank you for sharing your experience.Take care.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
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    Explanation
    I would say that I'm feeling fine, then ask them how they are feeling. If they push, I'd say "they removed the cancer and I feel fine. Nice weather we're having, isn't it?" If they keep pushing I would ask them why they want to know.

    Most doctors do not like to use the "C" word (cured) since they really don't know, they just know if you are NED or not.

    I don't get what them being highly educated people has to do with it. Just because they are highly educated it doesn't mean they are smart or tactful people. Just as the opposite holds true. Someone can be very smart but not well educated.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #7
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    Good answers
    This may sound silly, but I don't want any negative words used to describe my health.

    Greg, my onc said, about a month ago, 'I fully suspect you to be fully healed'. I said 'Suspect?' and he said 'Expect. I fully EXPECT you to be fully healed'. I LIKE that. He's a precious young Indian man who loves to hug people. I'm a hugger, too.

    Buying a lottery ticket today so if y'all hear me whopping it up tonight, pack your backs, we're having a HOE DOWN and y'all are ALL invited! :o) Yee Haw! (to quote our Mayor)

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