Data of all invasive solid malignancies diagnosed within the AYA population between 1998 and 2021 were obtained from the Netherlands Cancer Registry (NCR). The five-year CRS was calculated annually up to ten years post-diagnosis, using a hybrid analysis approach for the entire AYA solid malignancy cohort, and stratified by sex, age, and cancer type.
The growing number of adolescent and young adult (AYA) cancer survivors highlights the importance of their reintegration into society. However, years after recovery, cancer survivors still need to disclose their cancer history when applying for insurance. Right to be forgotten (RTBF) laws aim to protect cancer survivors from financial discrimination by shortening the required disclosure period. The required period for a disease to be forgotten varies between countries up to ten years in the Netherlands. Currently, questions arise about whether existing RTBF laws disadvantage AYAs by grouping them with older patients. This observational study examined the long-term conditional relative survival (CRS) of AYA solid malignancy survivors to inform potential adjustments to RTBF laws.
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
These results can serve as a basis for the reappraisal of current RTBF regulations for AYA solid malignancy survivors in the Netherlands, which can have important implications for other European countries with RTBF policies.
The entire AYA solid malignancy survivor cohort (n = 71,973) reached the threshold of minimal excess mortality (CRS > 95%) four years post-diagnosis. For AYA survivors of germ cell and trophoblastic tumors (ovarian and testis), malignant melanoma, thyroid carcinoma, skin carcinoma, and neuroendocrine tumors (NET), the excess mortality was minimal (CRS > 95%) since diagnosis. Most other cancer types reached the 95% threshold within five or ten years post-diagnosis.
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