I’ve said it over and over — language matters.
Language matters a great deal.
A hot button issue for many in the cancer community, for a variety of reasons, is the terminology around awareness and prevention. It’s such a hot button for me, I just shuddered as I typed those words and I’ve heard others talk about their visceral reactions to these and other emotionally charged words in the breast cancer space. I do realize that many have their own personal perspectives (as I have mine); at the same time, there are some phrases that have a more universal reaction.
For a long time, many breast cancer organizations (governmental and otherwise) have focused on catching breast cancer when it’s newly active in the breast. That has lead to some of the slogans that are well known such as “Early Detection Saves Lives; or “Feel your Lumps, Save your Bumps.” Catchy sayings do stick with people like “Save the Tatas” or “Save Second Base” and yet, all of this focus on early detection and/or “preventing” cancer actually hasn’t resulted in lower deaths from breast cancer, this focus has ensured that women feel responsible for their cancer.
Here’s how I look at it.
There is no way to prevent cancer. We all have cancer cells in our bodies and, at some point, in some people, the switch to proliferate without brakes is turned on. Once that switch is flipped, that’s it biologically, cancer happens and often spreads. Once that switch is flipped, the horse has left the barn and all everyone can do is simply deal with what comes next, which is heightened surveillance and treatment.
What flips the switch? NO ONE KNOWS.
That is important, so I’m going to say it again — NO ONE KNOWS HOW THE SWITCH IS TURNED ON. We can guess at genetics or other “risk” factors, which I would submit are uncovered far more with correlation than causation, but the basic understanding of what is responsible for causing cancer is a mystery.
So when there is information about preventing cancer or campaigns talking about the consistent themes in cancer patients like having taken birth control or carrying extra weight or diet choices or exercise habits, all that does is create guilt in the people with cancer and pressure on those without cancer. The themes in our world and cultures have given us this list of risk factors — for instance, access to birth control is so prevalent now, most people with breasts have taken it during their lifetimes. Birth control doesn’t cause cancer and not taking birth control does not prevent cancer, but breast cancer patients are often made to feel bad about this choice.
Who does it help to make patients feel responsible for their disease?
Generally, I would submit that it helps no one to put the blame on the patient. Cynically, I think putting the blame on the patient relieves some governmental officials of pressure on them to fund research or to address public health issues when examining regulations that affect other things like the environment or big business. If we cause our own cancer, then no one else is responsible for making our food safer or reduce carcinogens in the environment.
I’m not suggesting that looking broadly at all the potential risk factors in cancer is easy, just that the last person anyone should be blaming is the patient. We are all at the mercy of many things that are out of our control and until there is definitive evidence that certain behavior or others cause or prevent cancer, no one should be inferring that this is possible.
It is NOT possible to prevent cancer; it IS possible to reduce one’s risk for cancer and to increase surveillance on those who have an increased risk for developing cancer.
This, I would submit, is where the focus should be. Let’s not point fingers at anyone until we know for sure there is a causative link. For now, when we don’t know, if we encourage everyone to work together to reduce the risk for cancer for the general population, we not only have a chance of success, we will also limit the finger pointing and blaming that is inflicted on a patient already dealing with the worst crisis they’ve ever faced.
People with cancer need to have their lives made easier and smoother and to be able to look forward towards better quality of life rather than backwards towards what cannot be changed or affected. Isn’t that what everyone needs, regardless of a serious health diagnosis? Let’s remember to keep the humanity in our efforts and not blame the patients for their predicament.