Never Been NED, but There's Still Tomorrow
Last updated: May 2023
Do you ever think back to your childhood? About the things you learned, the conversations you were a part of, the ones you overheard from adults? Not just the fun stuff, but the serious things too?
I remember from my youth, and that's a whole lot of years ago, that the somewhat nebulous term "remission" was sometimes used in the same sentence with cancer. In those days, I don't remember the Big C being separated into the dozens upon dozens of different types that we now use to talk about it. But, I do remember hearing the occasional news report about some celebrity that was in remission, or the whispered conversation among adults about some acquaintance who was in remission. What, exactly, that meant...well, I guessed it meant that the cancer had gone away, or receded, or was not causing problems for the patient any longer.
Aspirations of being NED
Now, the term we hear more often is that a patient is NED. What the heck is NED? Sounds like someone from The Beverly Hillbillies. But, it's not. It means No Evidence of Disease. Stated in old terms, that would be full remission. And that's a very good thing for all patients who achieve it.
So far, I have never been NED since my diagnosis, but it is something I aspire to. I jokingly tell friends that I actually aspire to BEN because I like that name better than NED. Hey, there's nothing wrong with being a little weird. It keeps the world interesting.
NED plays hard to get
I've been through chemotherapy twice, a more targeted therapy, immunotherapy, radiation and a combination therapy clinical trial. After all of that, the closest I've come, so far, is partial remission. I guess that is when the tumors shrink and stay shrunk for a while. Anyway, if NED is going to play hard to get, I can live with little tumors that stay that way and don't cause trouble both figuratively or medically.
The problem with NED is that he can be a real dastardly dude. He comes in and sweeps a patient off her feet, forms an exciting and wonderful relationship with her (or him), then too often drops her like a hot potato at the first sign of trouble. I must say though, even knowing NED's history, I'd still like to give him a chance to prove himself in my life. Funny guy, that NED. He only hangs around cancer patients. What's with that anyway?
The importance of lung cancer research
On a serious note, NED status for lung cancer patients, particularly those with stage 4 disease, is most often a temporary condition. There are more patients who are continuing in NED status for longer periods than in the past, some for years. That remains the exception, unfortunately, and is why ongoing and new research continues to be so important. Cancer cells are adaptable little buggers and they work hard to find ways around even the best new therapies.
We can celebrate the fact that so many more treatments are available to lung cancer patients now than were available only 5 years ago, and some of those are showing great promise for long-term benefits to patients. Still, NED will be a sought-after date for a long time to come in lung cancer world.
Editor's Note: We are extremely saddened to say that on June 8, 2019, Karen Loss passed away. Karen was a valued member of the lung cancer community and an incredible advocate and avid writer. She will be deeply missed.
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