For a growing number of people with metastatic cancer, precision medicine has made the language of chronic disease possible. Genomic testing can identify a target; targeted therapy can offer durable response, fewer side effects, and longer survival. For some, it has made possible a life that accommodates work, family and plans.
The practice is less even. Access to comprehensive genomic profiling varies by age, by geography, and by service. Drug access tends to follow population size and commercial return, so people with rarer cancers often wait longer for both treatments and trials. The measures used to describe how well people are living were largely designed for shorter courses of treatment, and may not capture what indefinite treatment asks of those on it. And as treatment becomes more finely subdivided, so does community. People find themselves outside the group they assumed they belonged to. They are too well to look unwell, too rare to see themselves represented, and sometimes sitting alongside others for whom the promise has not arrived.
Drawing on lived experience and on conversations within the metastatic cancer community, this presentation considers the distance between the promise and the practice, and invites reflection on how survivorship care, services and research priorities might better respond to the growing group this progress has created.