“The chronicity of metastatic tumors poses challenges to patients and society”

2024-10-15 12:00:00

Noous, a collective of eleven associations, composed of the Collectif 1310 which brings together the associations involved in metastatic breast cancer, but also Cerhom and Anamacap involved in male tumors, and My lung cancer network. Together with healthcare professionals and stakeholders, we invite public decision makers to talk about the chronic nature of these tumors that have spread to multiple organs. We ask you to consider the challenges this development poses for patients and society.

Some metastatic tumors become chronic when the disease is considered untreatable based on current medical knowledge, but its progression can be controlled. In just a few years, therapeutic innovations have positively transformed the prognosis of these metastatic diseases. They allow you to live longer, while improving the quality of personal and professional life of the people concerned.

However, these improvements cannot be an illusion: the disease remains unstable, invisible and uncertain, with the threat of relapse and the cumulative effects of treatment.

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This paradoxical situation is unprecedented. This raises three important new challenges: having health data to identify new needs and improve care; develop the organization and coordination of care; change the vision of society, making patients invisible in their social and professional lives.

Understand and better understand the impact of chronic cancers

Today there is no precise evaluation of the number of these tumors and their evolution, nor specialized registries. Available health data remains fragmented, generic and too old.

Having this data would allow us to advance research and create more adequate and targeted public policies in the territories, while at the same time fighting against inequalities in access and care.

We call for the creation of specific indicators for metastatic tumors in order to better identify them. This requires the mobilization of all the players in the sector, associations, doctors, but also health authorities, general directorate of health care, health insurance, National Cancer Institute (Inca), to work on the definition of these indicators and their collection.

Optimize care pathways and monitoring adapted to permanent treatments

Our healthcare system is now designed to manage localized cancers in hospitals. It is not yet sufficiently adapted to the treatment paths of metastatic tumors and does not have the means to coordinate with the city. And paradoxically, the more the disease takes hold, the less support patients receive over time.