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."
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.