The language of cancer care and “survivorship”

Every year it raises its head again … the way we often use militaristic and emotional language to describe the experience of dealing with cancer … not just as patients and caregivers but as researchers and physicians too. This time the message comes from my friend Howard Wolinsky, a Chicago-based journalist who writes regularly on living with prostate cancer.

In his most recent article on the MedPage Today web site. Howard discourses passionately on the fact that he does not consider himself to be a cancer “survivor” and his dislike of being addressed as such.

As someone who has worked in oncology for years, I have become accustomed to why this issue can arouse strong feelings. I have also come to the realization that  this has more to do with the emotional and psychological needs of the individuals involved than it does with any objective criteria related to disease in general.

The use of the term “survivor” as a medical descriptor for those living with a specific disorder started with the AIDS crisis in the 1980s, before there were any truly effective treatments for HIV and when every patient diagnosed with AIDS was very definitely categorizable as a “survivor” of their infection — until they weren’t. The HIV/AIDS community used the term as a rallying cry for the need for research and the rapid approval of effective treatments of HIV infection, and they were highly successful.

The cancer community — and most particularly the breast cancer community — then adopted the term for similar reasons. However, there are important distinctions between HIV infection and cancer. Many cancers are not, in fact, deadly disorders at all, however difficult they may be to live with. On the other hand, some forms of cancer are. If you are disagnosed with multiple myeloma, or pancreatic cancer, or metastatic breast or prostate cancer, then every small (or large) treatment success is a “survival” event.

From a communication perspective, it is important for the communicator to be conscious of the subtleties of language in describing the experience of cancer in specific patient types. It is critical to understand that not every patient sees him- or herself as a “survivor”.  For some it is highly empowering. For others it can have exactly the opposite impact.

Sometimes, I have felt that the language of cancer can be analogous to the language of religious faith. For those who “believe”, the language is essential and important and empowering. And for those who take a less “faith-based” approach to life and cancer treatment, it can feel overly dramatic and sometimes distinctly unhelpful.

I don’t have cancer, so my views are those of an observer. On the other hand, I have had an acute myocardial infarction (a “heart attack”), nearly 15 years ago now. I “survived” that event. I also “survived” related mistreatment of what was incorrectly assumed to be an associated hospital-acquired infection. Does that make me a “heart attack survivor” or a “mistreatment survivor”? These aren’t terms I have ever applied to myself. Nor, as far as I am aware, have they ever been used to describe me by others.

Conversely, my father very definitely “survived” the Second World War — with several bullet wounds and an amputated right arm that were definitively war-related. He rarely talked about it. He simply “got on” with his life afterwards.

The term “survivor” is going to be used to describe some types of cancer patient, correctly, for years to come. So are the militaristic terms like “war”, “battle”, “fight”, and others as they refer to the way we seek to manage and find better ways to treat cancer. But it doesn’t hurt to think hard about each time one chooses to use one of these terms, and who one is using them about.