Young survivors: cancer and fertility

Four out of five children and adolescents with cancer can be cured nowadays but more than 80 per cent of the survivors struggle with late effects. Because these effects can have a negative impact on fertility and psychosexual health, preventive measures are essential. Since not all costs for fertility-preserving procedures are covered by health insurance companies, those affected suffer twice over. This is why systematised counselling services are required to provide parents, children and survivors with comprehensive information and a basic insurance that covers all necessary costs. Childhood Cancer Switzerland is launching a new awareness campaign on 1 June to draw attention to these major gaps in care.

When cancer is diagnosed, it is not only a matter of coming to terms with the initial shock of the diagnosis, but also of clarifying questions and making concrete decisions for the future. Since cancer treatments can lead to a loss or impairment of fertility, patients have to decide before treatment starts whether and which fertility-preserving measures can be taken into consideration. There are many challenges for children as well as parents; people are often unaware of the possibilities because fertility counselling before and after therapy is not yet offered everywhere as a matter of course. Decisive steps for later life can only be taken in good time if such counselling becomes standard in paediatric oncological treatment and follow-up care. “Everyone concerned should have the right to comprehensive information regarding fertility-preserving measures and sex therapy concerns. Infertility is one of the late effects of cancer therapy, which is why cancer patients should not have to pay for the treatment costs of IVF themselves. There is urgent need for action here,” says Prof. Nicolas von der Weid (MD), Head of Oncology / Hematology at the University Children’s Hospital Basel (UKBB).

Protection against infertility – also a question of finances
In recent years, various treatments have been developed to improve the chances of fertility preservation in girls and boys. These procedures can be used individually or in combination, depending on the specific diagnosis. Since 2019, the costs for the collection and freezing of gametes for post-pubertal children have been covered by health insurance companies. For children before puberty, the parents still have to pay for fertility-preserving measures. Since the majority of children affected by cancer are younger than four years old, this covers a lot of cases. Costs that may arise after therapy, such as the preventive removal of eggs in the event of an impending premature menopause or IVF in adulthood, are not covered either. That means that wanting children can become not only a question of fertility but also of finances. A 29-year-old survivor describes her situation as follows: “If you actually survive cancer, you think the worst is over. But over the years you notice that in some way or another the illness is going to be with you for the rest of your life. Not least, when you decide you would like children yourself and you find out that the disease may have affected your fertility and that there are significant costs to be faced.”

Body image, sexuality and partnership
Four out of five children and adolescents nowadays survive cancer, but at least 80 per cent of the survivors have to struggle with late effects of the disease and therapy. These include, among other things, psychosexual problems that can have a limiting effect on their quality of life. It is often the visible traces, such as growth disorders, thinning hair or scars and sexual dysfunction, that can make it more difficult for survivors to develop a positive attitude towards their body and themselves. Those affected may be particularly challenged when it comes to opening up to relationships in the first place, looking for a partner and perhaps starting a family of their own later on. As survivors often feel ashamed or perhaps do not have sufficient knowledge, questions, fears and concerns they have often remain unaddressed. Even though the need for learning about such problems is growing, there are still too few contact points offering combined fertility and sexual therapy counselling for survivors. Find more information here.