CaSSur

The number of people diagnosed with cancer but not treated - simply under active surveillance - is likely to increase considerably in the coming years. Several factors can explain this trend. First, significant efforts have been made in France, in Europe and around the world to improve cancer screening and the early detection of cancers. The idea is that intervening earlier can prevent the disease from progressing towards more severe stages that would require more cumbersome and invasive approaches. Furthermore, new diagnostic techniques and technologies, as well as their increasing accessibility, can significantly expand screening and the early detection of cancer. However, the trajectory of certain cancers - particularly prostate or thyroid cancers - is in reality profoundly heterogeneous. It is not at all certain that these cancers, when diagnosed very early, will necessarily develop in such a way as to cause harm to the people concerned, whether in terms of quality of life or longevity. These cancers are then called indolent: they are doomed to remain stable, dormant. In order to avoid problems of overtreatment, the people concerned are often offered so-called active surveillance. Follow-up consultations aimed at assessing the level and speed of progression of the disease at more or less regular intervals are offered to them every few months or every year. Several epistemic, ethical and social issues are raised by this emerging figure in cancerology: that of "patients-in-waiting". These people who have the status of patients without being really sick, plunged into uncertainty, tend to suffer from the impact of their diagnosis much more than of their disease. This population is going to grow quite a bit in the coming years but nevertheless remaining in a form of invisibility. Indeed, as they only see their specialist occasionally during generally short consultations, and almost never the other members of healthcare teams, the experiences of these people, their anxieties, their needs are not taken into considerationin the structuration of surveillance pathways. Furthermore, surveillance pathways can vary greatly in themselves: unequal access to the Diagnosis Disclosure procedure planned within the Cancer Plan 2003-2007, more or less significant involvement of the general practitioner, level of coordination between community medicine and hospital, access to patients' associations, etc. How do people diagnosed with cancer but under simple surveillance experience their diagnosis? How was this diagnosis announced to them? What words were used? How do they understand what was communicated and explained to them? What are their experiences of surveillance? What needs do they express?