These questions underpin our study in the British Journal of Cancer. Using nationwide data from the Netherlands, we examined the size and characteristics of a population that deserves greater recognition: patients living long-term with de novo metastatic incurable cancer.
From defining a population to counting it
Before we could count this population, we needed a consistent way to identify it. Terms such as advanced cancer, metastatic cancer describe overlapping groups, but do not clearly capture the experience of living for years with disease that cannot be cured.
In our earlier research, we developed a consensus-based definition of patients living long-term with incurable cancer. This provided a foundation for recognition, communication and further research. The next step was to apply that definition to population-level data, to move from describing a group to establishing how many people belong to it.
For the present study, we focused on adults with solid tumours that had spread to other parts of the body at their initial diagnosis, known as de novo metastatic cancer. We identified those who survived for at least two years after diagnosis, using the Netherlands Cancer Registry, maintained by the Netherlands Comprehensive Cancer Organisation (IKNL).
Our analyses covered diagnoses between 2000 and 2021. We excluded groups likely to have received treatment aimed at cure, including metastatic testicular cancer and selected patients with colorectal cancer. This distinction matters: metastatic cancer and incurable cancer are not always interchangeable.
Almost one in four survived for at least two years
The change over the study period was substantial. Among patients diagnosed in 2000, 1,298 survived for at least two years. Among those diagnosed in 2021, that number had risen to 5,398: more than four times as many.
The proportional change was equally important. In 2000, 12.0% of patients diagnosed with de novo metastatic incurable cancer survived for at least two years. By 2021, this had increased to 22.6%, or almost one in four.
This finding adds an important perspective to discussions about incurable cancer. Prolonged survival has become increasingly common within this population, although outcomes still vary considerably between cancer types and individuals. The possibility of living for years deserves a place in conversations about what an incurable diagnosis may mean.
Our study was descriptive. It did not establish which treatments or other factors caused these changes. Rather, it shows the population-level shift that has occurred during an era of evolving cancer treatment.
More than 18,000 people living with this reality
WWe also examined how many patients were alive at least two years after diagnosis on a specific index date (February 2024) to estimate the population potentially requiring ongoing care. On 1 February 2024, we identified 18,466 such patients among those diagnosed in 2000–2021.
That corresponds to approximately one person per 1,000 inhabitants in the Netherlands. Expressed in the context of primary care, it amounts to around two patients in an average Dutch general practice.
The duration of survival also stood out. Among the patients in our cohort, 55.8% were alive 2-5 years at the index date, 31.0% were alive 5-10 years, and 13.2% were at least ten years beyond diagnosis at the index date. Prostate, lung, breast and colorectal cancer were the most common tumour types.
A population larger than our study can capture
The 18,466 patients represent only part of the broader population living long-term with incurable cancer. Our study did not include people whose cancer became metastatic after an earlier diagnosis, incurable hematological malignancies, or locally advanced cancers for which cure was no longer possible.
Although we excluded selected groups likely to have been treated with curative intent, classification cannot perfectly capture every clinical situation. Our findings therefore provide an important population estimate within a clearly defined scope, rather than a complete count of everyone living long-term with incurable cancer.
What should longer survival mean for care?
Knowing the size of this population raises questions that numbers alone cannot answer. What is the quality of those additional years? Which difficulties persist, emerge or change over time? What support do patients and their families need?
Research discussed in our paper describes uncertainty, treatment burden and challenges involving work, relationships and everyday life. Our registry study did not measure these experiences, but it demonstrates why understanding them matters on a substantial scale.
Care may need to combine continued specialist treatment with sustained support from primary, community and social care. Elements of survivorship care and palliative care can both be relevant, with support guided by individual needs throughout the illness trajectory.
The two-year threshold helped us identify a population for research. It should not become a waiting period for support. Patients may need help with symptoms, emotional concerns or practical difficulties well before they meet any definition of long-term survival.
By making this growing population visible, our study provides a foundation for the next questions: who needs additional support, when should it be offered, and how can services work together to provide it? As more people live for years with incurable cancer, understanding and supporting those years must become an integral part of cancer care.