The headline for the July 29th New York Times article read “Scientists Seek to Rein in Diagnoses of Cancer.” The accompanying article discusses the fact that many diagnoses of cancer are of conditions that, though pre-malignant or not life-threatening, are labelled as cancer and frighten patients into seeking “what may be unneeded and potentially harmful treatments.”
This follows the widespread recognition among researchers that many forms of cancer and cancer-related conditions are not particularly dangerous and would best be treated as chronic rather than acute conditions. Patients with such cancers should not seek radical treatment to expunge the offending cells but should rather wait and watch, or in some cases, do nothing at all.
The most widely read recent book on cancer, The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee declares that the so-called war against cancer will never find a way to avert cancer entirely – “even the knowledge of cancer’s biology is unlikely to eradicate cancer fully from our lives” and “no simple, universal or definitive cure is in sight – and is never likely to be…”
However in our minds after more than forty years of bellicose cancer language, most of us have become so terrified of the diagnosis of cancer that we responded almost automatically to this call to war. We “battle the disease” on all fronts, from the individual clinical episode to the primary research labs. People with cancer are told that they are “survivors” from the moment they are diagnosed bringing to mind the Holocaust and the trauma even of its survivors. Researchers still promise to “Conquer Cancer!” And seek continued funding for this “War Effort.” This disingenuous call to war has been echoed for many years in chronic disease-based organizations, all of which originated during the post-war boom when extreme scientific optimism promised mastery over Nature. Science would help us gain ascendance over all natural forces, from the weather to beach erosion.
Despite enormous scientific advance and untold technological innovations, most of these extreme promises have not been met. To a large extent we have for the most part recognized that the scientific enterprise is best when it seeks to explore and better understand natural processes rather than attempts to control or “conquer” them. In medicine that recognition is just beginning and many illusions remain. We must work hard to find new and less militaristic metaphors for living with disease.
At Patients Canada we are hardly opposed to medical research, but do not believe that it should be funded under these false warlike pretences. Moreover we recognize that cancer, like heart disease, lung disease and diabetes are the greatest causes of death in our country, and that many people live with these diseases for a very long time; a critical research focus must be on helping people to do just that – to lead long, healthy and meaningful lives despite them. In order to do this kind of research people living with disease and their families must participate not only in the treatment of their conditions, but also in the research that supports better ways to live with them. We believe that patient partnerships in care and research can improve the experience of living with cancer, or diabetes, or heart disease. And that improvement must be judged primarily by the experience of people with the diseases and those close to them as family caregivers.
Patients Canada has learned from the many experiences of people with chronic conditions that partnership between them, their families and caring providers can dramatically improve capacity to live with chronic conditions. These necessary partnerships can also avert many of the more severe acute episodes that can accompany chronic disease. We believe that the voices of patients and families living with these diseases is critically needed to join in the research efforts as well as treatment.