ENIn Germany, neuroblastoma is treated in paediatric oncology departments of university and large municipal hospitals, to nationwide protocols. It is the commonest solid tumour of early childhood outside the brain. It grows from immature neural crest cells, from which the sympathetic nervous system develops, so it is most often found in an adrenal gland or along the spine.
Parents should know that one name covers diseases that behave completely differently: in some infants the tumour disappears on its own, while others need a long programme of several treatments. So the first step is an exact risk group, not treatment. This page explains how it is set and what neuroblastoma treatment in Germany involves; for an overview, see paediatric oncology in Germany.
Establishing the diagnosis
Diagnosis combines urine and blood tests, scans, a bone marrow test and a biopsy, usually after parents notice signs. These depend on where the tumour grows: a swollen abdomen or a lump, bone pain or limping, bruising around the eyes, weak legs if the tumour presses on the spinal cord, and fever, pallor or tiredness. Often it turns up by chance on an ultrasound. The cause is usually unknown, and no link to anything parents did in pregnancy has been shown. Rarely there is a family predisposition (ALK or PHOX2B gene changes), and genetic counselling is offered.
The tumour usually releases catecholamines (hormones and nerve messengers), so their breakdown products, vanillylmandelic and homovanillic acid, rise in the urine; the blood shows neuron-specific enolase, and ferritin and LDH help judge the outlook. With an ultrasound, these tests often point to the diagnosis.
MRI, preferred to CT as it uses no radiation, shows the tumour and nearby vessels and organs. MIBG scintigraphy, with a substance taken up by catecholamine-producing tissue, shows both the primary tumour and distant deposits; PET-CT is sometimes used for tumours that do not take it up. Bone marrow, where the tumour spreads most often, is sampled from several sites.
A biopsy confirms the diagnosis and reveals molecular features: MYCN gene amplification (many copies of the gene), loss of parts of chromosome 1p or 11q, and ploidy, the number of chromosomes per cell. These outweigh tumour size: even a localised tumour with MYCN amplification is high risk. In Germany specialised laboratories run these tests, and reference centres re-examine scans, marrow and histology, so slides and blocks from home are reviewed too.
Risk groups: why the treatment differs so much
Treatment differs because children fall into different risk groups, built from the international INRG factors: stage (a localised tumour with or without image-defined risk factors, metastatic disease, or the special MS form in children younger than 18 months, with metastases only in skin, liver and bone marrow), age, histology, MYCN and other molecular markers. German guidelines use three groups: low risk, also called observation, intermediate and high.
Observation without treatment is a real option for some children, mostly infants, with a localised tumour and favourable biology. This is not a withdrawal of care but a recognised path: such tumours often shrink unaided, so surgery or a biopsy alone suffices. It demands discipline: regular check-ups, scans and marker tests, most often in the first year, with mild chemotherapy if the tumour grows or causes symptoms. The Krebsinformationsdienst of the German Cancer Research Center explains this regression (in German).
Intermediate risk means surgery and chemotherapy, intensive cycles followed by milder maintenance tablets, with radiotherapy for an active remnant in some children; the whole treatment takes about a year. High risk is described below.
The high-risk programme
High-risk treatment follows a protocol of several phases over many months. Induction chemotherapy comes first: about five months of alternating multi-drug cycles to shrink the tumour and clear the bone marrow. Meanwhile the child’s own blood stem cells are collected from the blood and frozen.
Between or after cycles, a surgeon removes the primary tumour as completely as is safe for nearby organs. Because neuroblastoma can encase large vessels, this should be a paediatric surgeon experienced with these tumours.
Consolidation follows: high-dose chemotherapy that destroys the blood-forming system along with tumour cells, after which the frozen stem cells are returned. This phase takes about six weeks and is done almost only at large, mainly university hospitals (see bone marrow and stem cell transplant). Radiotherapy to the former tumour site comes next.
Maintenance is immunotherapy with an antibody against GD2, a molecule on neuroblastoma cells; in Germany the standard is dinutuximab beta. It helps the immune system destroy remaining tumour cells but often causes pain, fever and low blood pressure, so this immunotherapy needs an experienced centre. Isotretinoin, long given at this stage and still used with the antibody in US regimens, is no longer standard in Germany. Departments follow protocols of the Society for Paediatric Oncology and Haematology (GPOH) and linked international trials, for high risk the European HR-NBL2 trial. A protocol means a fixed scheme with outside monitoring by a trial centre and reference laboratories.
Where it is treated in Germany
Children are treated in paediatric oncology and haematology departments of university and large municipal hospitals. At the Dr von Hauner Children’s Hospital of the LMU in Munich, Professor Christoph Klein directs the hospital and its haematology and oncology team. At Klinikum Stuttgart, PD Dr Claudia Blattmann is medical director of paediatric oncology, haematology and immunology. The children’s centre at München Klinik Schwabing, run jointly with the TUM university hospital, is led by Professor Julia Hauer. Heidelberg University Hospital also treats children with cancer at its Centre for Paediatric and Adolescent Medicine.
Ask whether a centre follows GPOH protocols with the reference laboratories, has a high-dose chemotherapy unit with stem cell return, experience with antibody immunotherapy and a paediatric surgeon for these tumours, and who looks after the child between cycles. See also the directory of children’s hospitals in Germany.
Frequently asked questions
Can neuroblastoma be cured?
Yes, many children are cured, but the chances depend mainly on risk group and stage. Localised tumours with favourable biology often need only surgery or observation; high-risk disease needs a long, intensive programme and has a more guarded outlook. Only the treating oncologist can judge an individual child’s prospects.
Can neuroblastoma go away without treatment?
Yes, in some children, especially infants, a tumour with favourable biology can shrink and disappear as its immature cells mature or die. This can be relied on only after a full work-up has placed the child in the observation group; check-ups, scans and tests then replace chemotherapy.
How long does high-risk treatment take?
The whole high-risk programme can take up to two years. Induction chemotherapy lasts about five months and high-dose chemotherapy with stem cell return about six weeks, followed by radiotherapy and immunotherapy. Timing varies, so families should plan for many months near the hospital.
How AlenMed arranges treatment
AlenMed starts by collecting discharge summaries, laboratory and scintigraphy results, DICOM imaging, the histology report with slides and blocks, and a record of cycles given. We translate them, pass them to paediatric oncology, obtain a written answer on the risk group and proposed plan, and request an estimate with the visa invitation. The estimate covers diagnostics and review of material, chemotherapy, surgery, high-dose therapy with stem cell return, radiotherapy, immunotherapy and months of living nearby; the hospital sets the sum for the plan. General costing is explained under cancer treatment prices in Germany.
AlenMed has 86 partner hospitals in 38 cities and 345 doctors, with its company office in Munich. Because a high-risk programme runs for months, the coordinator helps with long-term accommodation near the hospital, interprets at appointments and the tumour board, and collects the discharge summary, pathology report and follow-up plan.
This material is for information only and is not an offer. Treatment is decided by a doctor at a face-to-face examination.
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