Cancer Semantics?

Over the last several years we have finally entered a new era in the understanding and treatment of the hundreds of diseases we lump under the one word: cancer. For hundreds of years the treatment has been ever more aggressive surgery, chemotherapy, and radiation that the cancer community calls “cut, poison, and burn.”  From the earliest writing about cancer, we see the pattern; cancer is seemingly eliminated completely by one or more of these traditional treatments, and no cancer cells can be found anywhere in the body. A patient is said to be “cured” or more commonly called “cancer-free,” only to have the cancer reappear years later, often quickly killing the relapsed patient. Virtually all of the basic research over the last 150 years has been focused on answering the question: Where was it hiding?

Today we have a new understanding of the way cancer works, and we have the answer to that question, even though it raises a whole new set of problems of almost unfathomable complexity: It wasn’t hiding anywhere. We have come to understand the genetic origens of most if not all cancers. Certainly there are environmental factors at play, but who of us has not heard of the grandparent who smoked two packs a day for 65 years and died of natural causes? No, there’s surely something else in play, and that is the precise genetic “switch,” a trigger that can turn the cancer process back on after years of dormancy. Leading edge research into some specific blood cancers and particularly metastatic melanoma (skin cancer) have discovered workable drug treatments that prevent the switch from flipping and in some cases even turn it off after it has flipped.  

The history of cancer is told brilliantly in the terrific book, The Emperor of All Maladies: A Biography of Cancer, and the even better documentary film of the same name. The last part of the film, in particular, gives a starkly realistic look at the state of genetic and immunotherapy approaches to cancer that is at once promising and sobering. I deal with this briefly at the end of my own book, Back to Life: A Bladder Cancer Journey. (With apologies for the shameless plug.)

With this new understanding of the mechanisms of cancers, we have also had to revise the terminology we use to describe that period where we can find no cancer cells. The most common and misleading term, still very much in use today, is “cancer-free.” Not to freak you out, but we have known for quite a long time that we all have cancer cells in our bodies all the time. What turns things into one of the diseases that we call cancer is the inability of our immune system to automatically and effectively attack cancer cells and keep the body in balance.

That’s where the popular term “remission” came from; an admission that the cancer was currently not detectable as a disease. One was said to be “in remission” or even “in complete remission” (whatever that means) subtly implying that maybe the cancer just might not be gone for good.

Now we are using a new term instead of remission, one that I like for its honesty and accuracy. It’s N.E.D. and it stands for No Evidence of Disease. It makes no promises, if you will.

You probably remember a few months back when it was announced that former president Jimmy Carter, practically given up for dead just a few months before with metastasized melanoma, was “cancer-free.” Actually, that was pretty ignorant journalism, because neither Carter nor his doctors ever used those words. No, what they said was that all of the tests available to them came back N.E.D., which is obvious quite different and considerably more accurate.

Why all this blather about the semantics of the post-genetic/immunotherapy cancer world? Easy. I just returned today from my eighth annual battery of tests for recurrence of bladder cancer, conducted by my surgeon (and author of the Foreword of my book), Dr. Sia Daneshmand, at the USC Norris Comprehensive Cancer Center in L.A.

And the results are in: all tests came back N.E.D.


January 27th, 2016
Portland, OR