Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.
One cancer survivor emphatically disagrees with the notion that cancer is now a “chronic” condition.
You’d think that in a field like medicine, which prides itself on being evidence-based, fads and fancies wouldn’t hold much sway. Yet in my experience as a cancer patient, that just isn’t so. Take, for instance, the tendency of doctors and researchers to say that cancer is now a “chronic” condition. “It isn’t a death sentence anymore,” they say. “More and more people are living longer.”
Note what they are not saying. They are not saying that, “More and more people are being cured.” They’re saying, “More and more people are living longer.” There’s a difference between those two, but it’s a difference that some people seem to wish to slide right past.
Note, too, that they do not usually specify how long “longer” is. As my oncologist friend J-Rad told me, a person with, say, lung cancer who only had six months to live 10 years ago may now have two years to live. For inflammatory breast cancer (IBC), not quite half of us are still alive five years after diagnosis. It used to be that we died within a year or two. For metastatic breast cancer (MBC), there’s now a two- to three-year median survival time. This is the “living longer” that they are talking about.
Patients with cancer are being kept alive for a few more months or a few more years than they used to in years past, ergo to some doctors it seems more like treating a longer-term illness than treating a disease that will soon enough, nevertheless, be fatal.
Now, this is an improvement. There’s no doubt about it. We should be happy for this. It’s a blessing for physicians and researchers to have given cancer patients a bit more time on earth before the end comes. A bit more time to savor life, to achieve goals, to set their affairs in order. And we need to find honest ways to celebrate these achievements that have been won by the hard work of thousands of bench scientists and clinical oncologists.
But that doesn’t mean they have made cancer into a chronic condition, yet. You can call a pig a horse and brag about your fine racing stable all you want, but at the end of the day, what you have is still a pig.
Famed oncologist Siddhartha Mukherjee does not believe this. He is all for re-naming the pig. Mukherjee’s excellent book, “The Emperor of All Maladies: A Biography of Cancer”, ends with this thought: “with cancer, … no simple, universal, or definitive cure is in sight — and is never likely to be ...” Ergo, he suggests that we may as well focus our efforts on “prolonging life rather than eliminating death. This War on Cancer may best be ‘won’ by redefining victory.”
And that is what oncologists have been busy doing in the last decade or so. Redefining victory. Moving the goalposts. Calling something that still kills you long before your time, “chronic.” Celebrating things that are only really small victories, as major victories. Calling a pig a horse, and bragging about their fine breeding stock.
Trouble is, they’ve been redefining it without a lot of input from the patients who are the ones living with the disease. “Chronic” may be a doctor’s view of what is happening, but it is far, far from what many (if not most) cancer patients experience. In a world that also touts “patient-centered medicine,” this is a serious oversight.
I don’t know about you, but to me something that is “chronic” is something that may impact your life to some extent, if you take care of it and mind it well, but it’s not likely going to kill you — and it is certainly not likely to kill you sooner rather than later. Like my parents, who have lived for decades with Type 2 diabetes. My mom died a few years ago with it, but not remotely because of it. My dad, nearly 90 years old, is still plugging along with it.
The health industry uses a different definition of “chronic.” To them, chronic has nothing to do with whether or not the condition is going to kill you. Whether it will kill you and how soon it will do so are totally separate issues. Instead, the definition of chronic is just something that is long-lasting, persistent or recurrent.
I have had migraines for about 30 years now. They have been a long-lasting, recurrent issue. That is chronic.
I have a little touch of asthma. It gets better or worse, usually depending on air quality. It is persistent. But it is manageable, and while it could flare up into a true breathing crisis and kill me, chances are that if I keep managing it properly, it will never kill me. It won't even come close.
Not so with metastatic breast cancer. It is not a health condition that, if you just stay on top of it, you can probably live a pretty normal life (and life span). No, MBC is a condition that will kill you, and it will do so sooner rather than later. The use of the word “chronic” to describe almost any cancer (with a very few exceptions) bothers me. To put it mildly, the use of the word “chronic” to describe metastatic breast cancer chaps me off royally.
I polled women from a listserv dedicated to metastatic breast cancer patients, asking them if they considered their cancer to be a chronic condition, or something that is not chronic. (Notice I did not use emotionally loaded words like “fatal” or “terminal.”)
The first two respondents were a woman with diabetes and a woman with rheumatoid arthritis. Both said emphatically that their MBC was nothing at all like their other health problems. The other problems were truly chronic, they said. But MBC? It is a fatal disease, not a chronic one. The vast majority of women on the listserv said the same thing, many of them quite emphatically in words not suitable for publication.
My favorite response was from a pharmacist who said that when 90% of the women who have metastatic disease live 20 years or more with it, then metastatic breast cancer will be chronic. But not until then.
My late friend, Kate Strosser, went even further. She insisted that not only did she want to live much, much longer with her MBC, but she wanted the treatments for it not to seriously compromise her quality of life in the process. These things not being likely, she insisted, she wanted a cure — pure and simple. Call the pig a pig, and deal with it.
Metastatic cancer is a long, long, long way from being — or becoming — a “chronic” disease. Those who would suggest otherwise are engaging in wishful thinking of a most foul and, to me, personally offensive kind. Calling MBC a chronic illness diminishes how serious it is and diminishes the fact that it kills us way too soon. Calling it a chronic illness diminishes the experiences of the women and men who have it and must face the rigors of the treatments necessary just to keep on drawing breath ... and the reality that in a very few years they will die from it anyway. Use of the word “chronic” under these conditions is insulting.
The words we use to describe things help shape our perceptions. And our perceptions shape our actions. I am afraid that viewing cancer as a chronic condition rather than admitting it is still fatal in the short-term (for the vast majority of advanced cancer patients) is damaging to patient care. The more you tend to think in terms of “chronic,” the less you may tend to think in terms of “cure.” And what cancer patients want is a cure. Today.