Cancer survivors have been increasingly advocating for research into the long-term effects of their treatments. Some researchers working on cancer survivorship issues engage survivors productively with their teams, but many do not, negatively impacting innovation in this field. Cancer survivors must be included in every stage of this research process.
I am a postdoctoral research scientist, and long-term survivor of childhood leukaemia, and in many ways, my life is an experiment. Owing to the treatments that saved my life, nobody knows exactly whether I will age with the same expectancy of health as my peers or indeed whether I will have a normal life expectancy. Despite this, childhood leukaemia treatment is frequently heralded as a success story of modern cancer medicine, but only recently are enough people like me surviving childhood cancers long-term that researchers can study what happens to us in statistically meaningful ways. Of children in high-income countries, 85% now survive their disease long-term1 with chemotherapy regimens tweaked over decades resulting in small, but consistent, gains in survival. Newer, targeted treatments such as tyrosine kinase inhibitors for leukaemias with rarer cytogenetic abnormalities and CD19 targeting therapies including CAR T cells for children who relapse continue to edge up survival for those with poorer prognoses. But survival is no longer the only goal, and nor should it be.