ENParents who start looking for paediatric oncology in Germany usually have one thought: was the tumour identified correctly, and is time being lost? Hence the main question about moving treatment abroad: what will be re-checked here, and what has to start again from scratch.
This page explains how paediatric oncology differs from adult oncology, how the diagnosis is confirmed in Germany, what treatment consists of and how the family is supported. See also treatment of children in Germany.
How cancer in children differs from cancer in adults
First, children have different tumours. Cancers that take decades to develop from smoking or diet are practically absent. Instead there are leukaemias, brain and spinal cord tumours, lymphomas, neuroblastoma, kidney tumours, and bone and soft tissue sarcomas. Leukaemia has its own page: childhood leukaemia treatment.
Second, tumours in children are, as a rule, more sensitive to chemotherapy, so treatment is more intensive but also more often successful. Yet the doctor weighs not only the tumour but what the therapy will mean for growth, hearing, the heart and fertility twenty years from now.
The third difference is treatment by protocol. In Germany a child is treated according to the current protocol of a study group, not at one doctor’s discretion, and this usually means taking part in an observational or therapeutic trial. Parents have this explained separately and are asked to consent. For adults, see cancer treatment in Germany.
How the diagnosis is re-checked in Germany
It nearly always starts with a review of the material: a German pathologist reads the slides and paraffin blocks, and in Germany every child’s material also gets a second review at a reference centre. Immunohistochemistry, a staining that shows which cells the tumour is made of, and molecular testing are added, because in children’s tumours the name of the diagnosis can change after genetic analysis, and the protocol changes with it.
Also involved: MRI with contrast, in some diagnoses CT or PET-CT, examination of the bone marrow and cerebrospinal fluid, and specific blood and urine tests, all ordered for the suspected diagnosis rather than as a package.
Documents from home that carry weight: the slides and blocks, not just the report; images as files on a disc; chemotherapy protocols with doses and dates; blood counts taken during treatment. Without doses and dates a German doctor cannot continue the treatment and must start counting again. More on genetic testing in Germany.
What the treatment consists of
For most children the basis is chemotherapy following a protocol, for some surgery, for some radiotherapy, often combined and in a strict order. The sequence is set by the protocol and cannot be skipped.
Some methods are used separately. A paediatric surgeon or neurosurgeon removes the tumour. Proton therapy, which exposes surrounding tissue to less radiation, is chosen for children where growing tissue needs sparing. Bone marrow transplantation is done when the protocol provides for it. In some leukaemias, and within trials in lymphomas, cell therapy is used: the child’s own immune cells are genetically modified to attack the tumour.
Supportive care is not secondary: anti-sickness drugs, pain control, blood support, fighting infection while immunity is low, nutrition, and fertility preservation in teenagers, which in Germany is discussed before therapy starts. The German Cancer Research Center’s cancer information service (Krebsinformationsdienst) gives an overview of childhood cancer in German.
Where children with tumours are treated
Children are treated in hospitals with paediatric oncology and haematology departments. AlenMed’s partners include the Dr. von Hauner Children’s Hospital, part of the Munich university hospital and headed by Prof. Christoph Klein, a specialist in paediatric haematology and oncology, and Klinikum Stuttgart, where the department «Paediatrics 5 — oncology, haematology, immunology» is led by PD Dr Claudia Blattmann.
The team includes the paediatric oncologist, paediatric surgeon, radiation oncologist, pathologist, paediatric intensive care, a psychologist, a social worker and a hospital school teacher. What matters for the family is that all of them are in one institution and meet together at the tumour board.
The family, school and what is rarely written about
In practice parents face long courses with breaks, a room for one parent, an infection risk that limits visitors, lessons with the hospital teacher so the child does not fall out of school, and work with a child psychologist. All of it is part of the treatment, not an extra.
What to take home: a report with the exact diagnosis and stage, the treatment protocol with doses, the follow-up schedule and an agreement on whom to call if the child has a fever. Ask for the documents in electronic form and have them translated.
Frequently asked questions
Will the biopsy have to be repeated in Germany?
Not necessarily. A German pathologist first reviews the slides and paraffin blocks you bring and runs any further tests on that material; whether a new biopsy is needed is decided after this review. So bring the slides and blocks themselves: a review cannot be done from a report’s text.
Can treatment started at home be continued in Germany?
That depends mainly on the documents. With chemotherapy protocols showing doses and dates, and blood counts from the treatment, the German doctor sees what has been done and decides how to continue; without them, counting starts again. The diagnosis is still re-checked, and if it changes, the protocol changes with it.
Does treatment by protocol mean new methods are being tested on my child?
Not necessarily. These are often therapy optimisation trials: all children with the same diagnosis are treated to uniform standards, sometimes in a new combination or with small improvements. Taking part is voluntary: the doctor explains chances and risks beforehand and asks for written consent; refusing must not disadvantage the child, and consent can be withdrawn at any time.
How AlenMed arranges treatment for a child
AlenMed starts with the documents: slides, blocks, images as files and protocols of previous treatment go to a paediatric oncology department, whose doctor answers whether the histology needs review, which protocol will apply and how long the first stage takes. Then come a written estimate, a visa invitation, long-stay accommodation for the parents and an interpreter at the appointments and the tumour board.
Plan for the length of the trip — paediatric oncology rarely fits into two weeks — and for enough of the current medication to last until the first consultation, vaccination records, the child’s things for a long stay and translation of the final documents for the doctor at home.
This material is for information and is not an offer; the diagnosis and treatment protocol are decided by a doctor in person.