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Science evening on late effects: ‘From life with, to life after childhood cancer’

As more children survive their cancer, often as a result of intensive treatment, the group of survivors is becoming bigger. Many people who had cancer when they were younger are well, but some experience delayed side-effects. On November 12 the Princess Máxima Center, in cooperation with the VOKK and the Client Council organized a parent information evening focusing on the scientific research of late effects. Nine guests attended the evening
in person and around 135 people participated online from all over the Netherlands.
Mapping out late effects
Researcher and pediatrician Leontien Kremer has worked on the theme of late effects since the late 1990’s.
Thanks to research, much more is now known about late effects that can be caused by cancer treatments –
meaning ‘LATER-care’ has become much more tailored. In 2006, Kremer collaborated with doctors, scientists,
psychologists and survivors to start the LATER-study, in which 6.000 ex-patients completed a range of tests and
questionnaires with the aim of thoroughly documenting late effects. The results are currently under analysis.
Results from research are translated into treatment guidelines. Leontien Kremer: ‘We keep building our
understanding of which patients are at risk, which tests are needed to detect possible late effects as early as
possible, and how they can be treated.’

Heleen van der Pal is an internal medicine physician working at the Máxima’s LATER-clinic, the outpatient clinic
dedicated to late effects. Five years after a child’s initial cancer diagnosis is an important moment to consider
quality care for possible late effects, she said. ‘At this five year mark, survivors are advised to attend the LATERclinic, where the focus lies on early detection of treatable late effects, coordinating care and offering information on possible health risks. An aftercare plan is put together based on both a child’s treatment and diagnosis, and best practice from the LATER treatment guidelines. The plan can be adjusted at each visit to the LATER-clinic.’ said Heleen van der Pal. Late effects can involve fitness and movement, organ function and (neuro)psychosocial skills. Cancer remains a key concern, with ex-patients being watched for signs of their disease coming back. Other forms of cancer are monitored too, for example, children who received radiation in the chest area later have an increased risk of developing breast cancer.

Hearing from survivors
Frederieke Cornelis and Jaap den Hartogh spoke about how they draw on their own experience of childhood
cancer in their work for VOX. As the part of the VOKK aimed at people who have had cancer as a child, VOX offers peer support, patient advocacy and individual help. Jaap held an ardent plea for equal opportunities in society for childhood cancer survivors, and how VOX works to enable this. Fertility was a widely shared concern among the attendees. Charlotte de Haan, who was interviewed by the VOKK’s Rosanneke Jongbloed, recognized this. She shares her experience as a survivor with visitors of the Máxima by volunteering on the VOKK desk. Many parents feel reassured when they hear she has two kids, Charlotte said. Now, 25 years after she was diagnosed with ALL aged 15, Charlotte is doing very well. But the disease still plays a role in her life: she tires quickly, and needs to plan ahead.

In her interview with Rosanneke, Charlotte shared her experience of undergoing heart and bone scans as part of
the LATER-study. These tests weren’t invasive at all, she argues specially compared with her cancer treatment. ‘It
felt good to do my bit in taking part in the research,’ Charlotte said. ‘Not so much for myself but for the children
who come after me.