By inspiring straight, open talk about cancer, LIVESTRONG represents a social movement in which the stigma associated with the word “cancer” is progressively reduced, and the community of support for those affected by cancer grows. There is still work to be done to make this happen.
A steadily emerging conversation in this straight and open talk about cancer is a discussion of overdiagnosis and overtreatment. This conversation is, appropriately, being elevated in part due to the newly published recommendations of a group convened by the National Cancer Institute. The focus of this group is to address aspects of these issues including:
1. Physicians, patients, and the general public must recognize that overdiagnosis is common and occurs more frequently with cancer screening.
2. Change cancer terminology based on companion diagnostics.
3. Create observational registries for low malignant potential lesions.
4. Mitigate overdiagnosis.
5. Expand the concept of how to approach cancer progression.
This discussion is intricate, in part because of the complexity and diversity of the hundreds of different pre-cancerous lesions and invasive cancers we face. There is not, nor should there be, one set of simple and universal rules when it comes to evaluating cancer risks, screening, and diagnosis.
The term “overdiagnosis” was described by this group as occurring “when tumors are detected that, if left unattended, would not become clinically apparent or cause death.” Overdiagnosis may expose individuals to avoidable psychological stress and expenses of screening or diagnostic tests, but the focus of the current discussion has been that “overdiagnosis, if not recognized, generally leads to overtreatment.”
For generations, the word cancer has been directly associated with an inevitable progression towards death. That stigma, which still persists in many parts of the world, can lead to two very different responses. In some areas of the world, the stigma of cancer may result in avoidance of diagnosis, the isolation of those diagnosed, and a reluctance to seek what may be interpreted as futile treatments. However, in places like the US, that same lethal stigma may result in seeking out any and all treatments to aggressively avoid a path to death from cancer, even in cases in which the real risk of progression or death is very small. It is the latter, in which patients may be offered and may feel compelled to pursue resections and therapies for lesions that are unlikely to cause harm, which is referred to as overtreatment. It is increasingly clear that overtreatment is a frequent risk in the US for cancer and pre-cancerous growths of the breast, prostate, thyroid, and perhaps others. It is often hard for an individual to accept the fact that in taking charge to do everything possible to avoid suffering and death from cancer they may instead be subjecting themselves to surgery and chemotherapy that they do not need.
The problem that a diagnosis may lead to unneeded treatment is one solvable through better knowledge, education and communication. Finding a lesion in and of itself is not necessarily a problem. In fact, many people are interested in learning more about themselves by pursuing not only cancer screening tests but also personal genetic testing. Knowing what to do (or not do) with that information is the issue, and one best addressed by more research. Too often we don’t have the right tools to determine which individuals with a given cancer or pre-cancerous lesion actually do have an abnormality that will progress or be life threatening and really would be the ones to benefit from treatments. And it only takes one story of an individual told they have nothing serious only to progress and die to reinforce the familiar cancer stigma. This is where the calls for research to develop better “companion” diagnostics and new “observational” registries should be stressed. We need to continue to get smarter about how to individualize a prognosis to better recommend who should pursue treatment and who can be observed. The goal is to deliver better information to patients so as to empower them to make their own best decisions. Fundamentally, overdiagnosis is may not necessarily be the root problem if we equip patients with the knowledge about what a diagnosis means.
The complexity is difficult. One quick suggestion to change the dynamic around overtreatment is to change the name of some of these less lethal conditions from “cancer” or “carcinoma” to a more benign name such as an “IDLE” condition (indolent lesions of epithelial origin). Such a name change cannot be a substitute for encouraging deeper knowledge and better communication among and between providers and patients.
This conversation about overdiagnosis, overtreatment, and how to approach abnormalities that are less likely to be deadly belongs to all of us in the cancer movement. And while the current focus is on overdiagnosis, we should not forget that we also face issues of unwarranted delays in diagnosis of deadly cancers, particularly among certain subpopulations. LIVESTRONG remains committed to being inclusive of all those affected by cancer. Each of us has a stake in this and a perspective to share, whether dealing with invasive cancer, indolent cancer, pre-cancerous lesions, an increased cancer risk (due to family history or genetics), or supporting a friend or family member as they wrestle with the physical, practical, and emotional issues that this complex spectrum of disorders can bring.