Cancer isn't one disease: better names mean less harm

Cancer isn't one disease: better names mean less harm
Photo by Keoki Seu, "Cancer Carl killed BANKSY," used with permission under a Creative Commons license

Words pack a punch. When I was told that I had cancer it felt like a fist in my gut. The word is huge and travels along at such speed that it carries with it every image of suffering, every scrap of memory, every phantom that you’ve ever encountered.

It was hard for me to say out loud at first. It wasn’t a word with shades or variations. It was an abyss that I fell into. Cancer opened up and swallowed me whole.

But cancer isn’t one thing. As I’ve read and begun to understand more about the diseases under its awful umbrella, I’ve come to think of cancer as a description of the behavior of cells. I think of its character, its desire to grow and multiply and spread, unrestrained and without purpose.

Where those cells grow and the genes that define them, however, make all the difference in the world.

Tech Times reported that the U.S. National Cancer Institute and U.S. National Human Genome Research Institute have been working on a new system to classify cancer based on its molecular and genetic features instead of on its point of origin. See the article here.

Bladder cancer, for instance, was found to have three distinctive subtypes. The hope is that each will become a “different” disease in terms of treatment protocols and prognosis.

Even before this research was conducted, specialists have considered bladder cancer two distinct diseases. One, let’s call it Bladder Cancer A, is characterized by low grade tumors that recur frequently but rarely progress or spread. Some in the field think of this disease as a “nuisance” but not a life threatening illness.

Clearly, knowing which cancer you have is critical both for treatment options and for a patient’s understanding of what they’re facing.

The New York Times reported last year that a working group at the National Cancer Institute would like to see the term “cancer” used far less frequently than it is currently. See the article here.

“They say, for instance, that some premalignant conditions, like one that affects the breast called ductal carcinoma in situ, which many doctors agree is not cancer, should be renamed to exclude the word carcinoma so that patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.”

While we are diagnosing and treating breast cancer, for instance, earlier and earlier according to the NYT article, we are not seeing reduced rates of invasive breast cancers.

So, what's in a name? There seem to be at least three harms to be found here:

  • patients are seeking extreme treatments, mastectomies for instance, for diseases that will never progress to malignant or life threatening
  • we seek earlier and earlier diagnosis and are more likely to expose ourselves to CT scans, which in turn cause cancer  (See another NYT article on this topic here.)
  • we create unnecessary fear and anxiety by using the term cancer to describe such divergent diseases as ductal carcinoma in situ and invasive breast cancer.

I look forward to an era of more precise naming and categorizing of the many, many diseases we call cancer. When we fine-tune these names, we fine-tune our treatments, do less harm, and bring shades and variations to a word that is, at the moment, the bluntest of instruments.

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