A total of 5,652 (former) patients with cancer started the online survey. Of them, 61 reported to be younger than 18 years old, and were excluded from further participation in the questionnaire. Of the 5,591 adult respondents, 4,715 completed the full questionnaire. Subsequently, 40 respondents were excluded because of invalid answers (e.g., the year of diagnosis preceded the year of birth). In total, 2,284 respondents did not meet the inclusion criterion (diagnosed ≥ 5y), resulting in 2,391 long-term cancer survivors eligible for analysis.

For the included cancer survivors, the median time between diagnosis and completion of the survey was 9 years (IQR 7) (Table 1). The median age at diagnosis was 52 years (IQR 16), and the median age at time of survey completion was 63 years (IQR 16). The majority of the respondents identified as women (n = 1,471, 61%), 42% (n = 980) was intermediate educated, and 49% (n = 1,150) advanced [27]. Breast cancer (n = 805, 34%) and blood or lymphoma cancer (n = 462, 19%) were the most diagnosed type of cancers. A total of 1,640 respondents reported to be a former cancer patient at the time of survey completion (69%). Most respondents were treated in a top-clinical hospital (n = 932, 39%), 34% (n = 817) was treated in an academic hospital, and 25% (n = 597) in a general hospital.

The majority of the respondents reported to be in paid employment (fulltime or part-time) at time of diagnosis (n = 1,519, 64%). Furthermore, 625 (26%) respondents reported to receive income via (early) basic retirement pension, and a small number received work disability benefits (n = 111, 5%), at time of diagnosis. At time of survey completion, the proportion of respondents that reported to be in paid employment decreased to 26% (n = 632), the proportion of respondents that reported to receive (early) basic retirement pension increased to 67% (n = 1,606), and the proportion that received work disability benefits increased to 26% (n = 632) (Table 1). One-third of the respondents who were employed at time of diagnosis were receiving work disability benefits at time of survey completion. This change in type of income over time is visualized in a Sankey plot (Fig. 1).

Sankey plot of income status at time of diagnosis versus time of survey completion. Answer categories I don't know and/or Not applicable were excluded from analyses. N = 2391. Multiple response options were possible, therefore total sum of types of income(s) may exceed the total sum of respondents (number of incomes reported: At diagnosis = 2858 vs. At survey completion 3523)

In total, 1,799 (75%) of the long-term cancer survivors reported income loss and/or extra expenses after their cancer diagnosis. In detail, 19% (n = 446) reported only a loss of income, 22% (n = 534) only experienced extra expenses, and the majority experienced both (n = 819, 34%) (Fig. 2A).

Overview financial toxicity outcomes. A. Objective financial burden, extra expenses and/or income loss after diagnosis. B. Ability to make ends meet over time, Sankey plot visualizes the difference in the self-reported ability to make ends meet before diagnosis vs. 1, 3 and 5 years after diagnosis. *** p < .001. C. Subjective financial distress, effect on psychological and physical well-being and effect on relationship close ones. D. Financial support; Answer categories I don't know and/or Not applicable were excluded from analyses

Within the group that reported to have experienced income loss (n = 1,265), the majority reported that it happened within the first year after diagnosis (n = 588, 47%), and that the loss of income was permanent (n = 897, 75%) (Fig. 2A). The extent of their income loss was (very) large for 52% of the respondents (n = 658 vs. moderate n = 439, 35% and (very) small n = 168, 13%).

Among the respondents who reported extra expenses (n = 1,353), the majority reported it happened within the first year after diagnosis (n = 1,063, 79%). Half of the respondents reported that the extra expenses were temporary 50% (n = 647), with a wide spread in duration (Fig. 2A). 48% reported that the increase in extra expenses was moderate (n = 653 vs. (very) large n = 400, 30% and (very) small (n = 300, 22%).

Before diagnosis, only 2% of the respondents reported difficulty in making ends meet (n = 39). However, the proportion of respondents who reported difficulty to make ends meet increased to 11% (n = 187) in the year following diagnosis, and to 13% at three years (n = 223) and five years (n = 220) after diagnosis. Five years after diagnosis, significantly more cancer survivors found it difficult to make ends meet compared to before diagnosis (p < 0.001). The most pronounced change in ability to make ends meet over time occurs within in the first year after diagnosis. The changes between the first and third year, as well as between the third and fifth year, are comparatively less substantial (Fig. 2B). No significant difference in making ends meet before and after diagnosis was found between patients with cancer and former cancer patients. Before diagnosis, in both groups, only 3% reported that it was difficult to make ends meet (having cancer n = 12 vs. former patients with cancer n = 27). However, five years after diagnosis, in both groups, the inability to make ends meet increased, respectively to 14% and 12% (having cancer n = 76 vs. former patients with cancer n = 144).

Of the long-term cancer survivors who reported to have experienced income loss and/or extra expenses after diagnosis, 86% (n = 2,050) took financial measures. The number of respondents that reported to be less or not able to save money was 33% (n = 784) and 37% (n = 878) had to cut back on luxury items (Table 2).

Furthermore, 58% of the respondents reported that the income loss and/or extra expenses had a negative effect on the psychological well-being (n = 983), and 42% (n = 708) reported that it had a negative effect on their physical well-being. Respondents reported that the income loss and/or extra expenses had a negative influence on the relationships with their partner, children or friends (n = 389, 27%, n = 242, 19%, n = 374, 23%, respectively) (Fig. 2C).

The majority of the respondents was not ashamed of the financial consequences of their diagnosis (n = 1,190, 68%). However, 36% (n = 618) reported to find it difficult to discuss this topic, and 24% (n = 421) considered the financial consequences a private matter (Table 2). Of the respondents who reported to have experienced income loss and/or extra expenses after diagnosis, 27% (n = 482) reported a need for financial guidance. Of them, only 32% (n = 156) actually received this. The majority of these survivors found financial support themselves, via their own network (e.g., friends/family) (n = 176, 70%). Merely 3% of the respondents who has received financial support reported that they were guided via a healthcare professional (n = 8) (Fig. 2D).

Finally, of the respondents who reported income loss and/or extra expenses after diagnosis, 847 respondents (47%) reported worrying about their financial future, with some expressing very high levels of concern (n = 255, 14%) (Table 2). Within the group of former cancer survivors, a similar level of (high) concern was reported about regarding the prospect of reduced income and/or increased expenses in the future (n = 560, 47%).