Wednesday, August 6, 2014

Stable vs Remission vs NED vs Cure

Every type of cancer has its own terminology; a type of shorthand in which patients use to communicate with each other, and it seems I have accidentally cross-pollinated two common phrases.  The garden is still just as beautiful but the bees buzzing around are slightly confused, so maybe I need to explain.

In Breast Cancer World,  when we are done with treatment and cancer is not visible to any scanning machine, we say we are NED.

In Other Cancer Type World, (like leukemia) the terminology used most often is Remission.

The National Cancer Institute's definition of Remission is, "A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body."

NED, of course, is, "No evidence of disease."  You can't see cancer on scans or in blood, but that doesn't mean it isn't there.

They mean the exact same thing.

Cure means one is restored to health, their disease never to return.

While we are on the subject of definitions, Stable is when your cancer is unchanged from one scan to another.  It is still there, but it hasn't grown or spread.

I'm not sure why breast cancer patients chose the phrase NED to relate to, except that it's fun to say we are "dancing with Ned."   It's not exactly accurate if you think about it, because even if we spend the rest of our lives on the dance floor, there will always be evidence of our disease.  If not physical scars, (and who gets away without those?)  there are the emotional ones (which nobody escapes). To me, NED is hardly accurate, which may be why I relate more to the word remission.

But it has caused a lot of confusion. I have gotten numerous emails and facebook messages from kind people concerned that I am misunderstanding my place in CancerLand.  I'm getting questions like, "If you had terminal cancer, how can it be gone?"  "Why do you think you are in remission instead of NED?" "I don't want you to be worried, but your cancer might come back, so you aren't in remission."

Clearly, people think remission means cure.  And, one very nice women told me her oncologist had suggested a difference between NED and remission and was worried about my optimism,  so now even I am wondering if I am wrong in my word choice.

I might be using the wrong word, but I understand my odds for staying cancer-free and they are certainly long, but not impossible.   According to the California Breast Cancer Research Program,  "At Stage IV, the disease is no longer considered curable, with the exception of the estimated 1-3 percent of patients who, for unknown reasons, experience longterm survival with stable disease or complete remission following treatment."  I am cautious.  I have already experienced the disappointment of thinking I was in that small percentage.  After my liver resection, I rejoiced that I was cancer-free and was sure that it would not come back.

Of course, it did.  That was a pretty shattering disappointment, and I am not going to let it happen again.  Like the old cliche, I hope for the best but am prepared for the worst.

As a women with metastatic cancer - cancer that has already proven that it likes to travel - I have to be realistic.   There may be cancer cells floating through my body right now, some sending out invitations for a gathering, others buying presents and housewarming gifts ready to get together in a new location. In fact, just like when you leave a teenager alone for the weekend, there is a 98% chance of party.  When the festivities get too big, the cops will be called to the area and the bash will be busted.

By being declared NED, or in Remission, I have merely been given the hope, the chance, the fleeting idea that I could be in the 1-3% and be rid of this disease.  My doctor said there was that possibility.

An Oncologist saying something like that to a person with metastatic breast cancer is along the lines of hearing a the Lottery Commissioner say,  "Yes, you won the PowerBall, you can pick up your $400 million dollar check next week."

It's magical.

Whatever word we choose - NED or Remission -  there is the vapor of hope, not only for me, but for everybody with metastatic disease.   Remember, the drug that got me to NED was not even around when I started treatment almost five years ago.  There are many cancer drugs in the process of being developed.

Maybe one day, all of us can use the word we really want to use:  CURE.


  1. Ann, Remission or NED, I am so happy for you. Definitely a reason to celebrate. What was the drug that got you to this place? I am just over 6 years at stage IV and still have options. Curious about what you took that wasn't around 5 years ago.

    1. It was Perjeta. Still in trials when I was diagnosed. The FDA approved it for metsters in June 2012 and I started it not long after. Now the FDA has approved it for use in early stage breast cancer too. It's an amazing drug.

      Unfortunately, not everybody benefits from it, and I do know people who have relapsed on it. But it seems to be a miracle for some. What we don't know is how long of a miracle. Some of the women who were in the trial still haven't had recurrence. There is a lot of unknowns about it. Butr I'm pretty happy!

  2. I am so happy for the joy and hope you are expeiencing! It's called LIVING life! As a 5 time survivor of 4 different types, last one being breast cancer, I know what a difference living is from fearing. #3 was stage 4 osteosarcoma, my kids were young, and it looked bleak. 10 years later I am rejoicing and living! I want to thank you for mentioning Little Pink Houses of Hope on your blog. I just got back from a retreat in N.C. as a volunteer, meeting 6 of the greatest warrior women, four at stage 4. It was wonderful!!!!

    1. Wow! I thought I'd been through the wringer. Congratulations on getting into one of the houses - I'm so glad my recommendation helped and they selected you!

  3. Ann, I agree with you that the evidence will always be there in our physical and mental scars. As for NED vs Remission -- Two weeks ago tomorrow I learned that my cancer, after a year and four months, was no longer visible. My report said "No Evidence of Metastatic Disease". That is the reason I call myself NED. Also, for me, the term "remission" gives me a sense of someone no longer in treatment. I remember reading about your fantastic news, and wanting Perjeta and Herceptin to do the same for me, but no such luck. TDM1 gave me a report that I still can't believe is real.

    1. It's funny because I was asking for TDM1 when the doctor suggested Perjeta. :) Now I still have TDM1 in my back pocket if I relapse, and you have Perjeta. There are more drugs coming up too - the triple negative girls need one like we HER2+ girls have.

  4. You are very strong! Cáncer you lose!

  5. Hey Ann!

    I am a long-time lover and reader of your blog. I started reading way back 18 months ago right after I lost my dad to a heart attack (I was on a morbid kick, and came across your Soul Pancake video). My mother had had breast cancer twice, and I found your blog really interesting.

    I found your story useful when my mom was diagnosed with DCIS (ultimately it turned out to be her third runaround with Stage I cancer), and I referred to your post on that subject.

    It ended up being SUPER useful when I was diagnosed with Stage II cancer last October. Yup.

    I'm 25. The odds of being diagnosed with breast cancer in your 20's is 1 in 2,000. If 1-3% of people with Stage IV cancer end up being "cured," I say that's good odds. 1 in 100?!?! Someone has got to be contributing to that statistic. I say it's going to be you.

    1. Hi Jaceyp! Thank you so much. My condolences on the loss of your Dad - the anniversary of my Dad's death was end of July. It is sad and I miss him.

      I have a 29 year old friend who was diagnosed with breast cancer about a year after me. I think she has hit her four year anniversary now, so she was your age. She had Stage IIIc - cancer had invaded her chest wall. But still, there are no signs of spread to this day, so she is doing well. She still comes in for her anti-hormonal shot so I see her regularly, and we've made a nice little friendship, despite our age difference.

      I hope the same outcome for you, and I hope that when you are my age you won't even remember you had cancer. (Trust me, your memory gets bad enough so that's a possibility! LOL)

      It was difficult enough being 50 and diagnosed with breast cancer - I was was the youngest in the treatment room by 20 years until my friend showed up. I can't imagine the diagnosis in your 20s - very few of your peers are going to be able to relate to you on the same level. While I don't know anybody who is metastatic in real life, I do know women who have had breast cancer. But that's the beauty of the internet, isn't it? Now you can find people online who get it and share your issues.

      *hugs* to you. I wish you and your mother good health and long life. Did you all get checked to see if you have the BRCA gene?

      It makes me really happy to hear that the blog was useful to you. And I totally agree about the odds!

      *big hugs*

    2. Check out Jacy's video blog - she is an actress and writer and her videos are dramatic re-enactments of her experience. There is much to laugh about and to relate to. I highly recommend checking her out!

  6. Your story is inspiring and fascinating and I too am hoping you're in the 1-3%. Well why not?! I wasn't really sure what those different terms meant, but you've explained it well - it sounds like NED and Remission mean the same thing ... but Cure would be much much better.

    1. Why not, indeed. :) Beating the odds is what I expected long ago, it just took me awhile to get to the point where it could happen again!

  7. I just found your blog because for the first time in my life (I'm 74) I've been called back for another mammogram and ultrasound. It's probably nothing, but even if it is, you're given me courage. I have just subscribed.

    Thank you, and all my best wishes.

    1. Good luck to you. I sincerely hope that it is not cancer but I promise you that even if you do hear those scary words, you'll be able to manage. *hugs*

  8. I think a lot of people associate remission with cured. I am not sure if movies did it or how it came to be. I have avoided the term because it is confusing to people - or maybe just to me. :) This is a great post. I always preferred the term NED because it said what it was, no evidence of disease.


Thank you for commenting. If the post is over 14 days old, the comment will be moderated and will approved later. This is a spam prevention technique - but I love to hear from you!