For this study, researchers analyzed data from nearly 72,000 young adults (aged 18 to 39) in the Netherlands who had been diagnosed with cancer between 1998 and 2021. Using data from the Netherlands Cancer Registry, they compared their survival outcomes to those of peers who hadn’t been diagnosed with cancer. “We found that the survival rates for most of the young adults match those of their peers within just four years of diagnosis,” says PhD student Noelle Vrancken Peeters. “Which means that many former patients are wrongly perceived as risks for years,” adds fellow PhD student Daan van der Meer.
Certain cancer types, such as skin cancer, thyroid cancer, and testicular or ovarian cancer, already have a high survival rate from the moment of diagnosis. This patient group barely sees a higher mortality rate than their peers.
“It’s a heavy burden for many young adults to have to disclose their history with cancer for so long,” says Olga Husson, associate professor in Adolescent and Yound Adult (AYA) oncology. “They’re often just starting out with their adult lives, with plans for work, housing, or starting a family. Young adults face additional barriers compared to many older survivors, who may already have stable jobs and homes. Current regulations don’t sufficiently account for this and end up being disproportionately restrictive.”
The findings support calls to revise the rules around the ‘Right to be Forgotten’ for cancer survivors. This right allows former patients to no longer disclose their cancer history after a certain number of years when applying for life insurance, for example. Disclosing their history can negatively affect access to mortgages as well. Patients in the Netherlands often have to disclose their history with cancer for ten years after diagnosis. Countries like France and Spain have already reduced this to five years. “These findings are relevant outside the Netherlands as well, such as other countries with similar legislation. We hope these results contribute to fairer policies that consider both age and cancer type,” says Winette van der Graaf, medical oncologist and chairman of the Dutch National AYA ‘Young and Cancer’ Network.
The European Cancer Organisation (ECO), a long-time advocate for RTBF reform, supports a standardized five-year disclosure limit across Europe. ECO emphasizes that survivor rights must be protected through binding legislation, especially for AYAs, whose survival outcomes justify earlier financial reintegration without discrimination.