ENEwing sarcoma is a rare malignant tumour of bone or soft tissue; in Germany it is treated by European protocols combining chemotherapy with surgery, radiotherapy or both. It mostly affects teenagers and young adults, less often young children and older adults, and usually grows in the pelvis, thigh bone, ribs or spine. Its first signs, pain and swelling, are often mistaken for an injury or “growing pains”.
AlenMed arranges Ewing sarcoma treatment in Germany mainly at partner hospitals in Munich: paediatric oncology at LMU University Hospital, the children’s centre at München Klinik Schwabing, orthopaedic oncology and radiotherapy are all in one city, so a family can complete months of treatment without moving. Sarcoma in general is covered under sarcoma treatment in Germany, and osteosarcoma and other bone tumours under bone cancer treatment.
Confirming the diagnosis and stage
The diagnosis is confirmed by a biopsy with genetic testing, and the stage by whole-body imaging and a bone marrow examination. The biopsy, a small tissue sample, is best taken at the treating centre, planned so that its track can be removed at surgery. The tissue is checked for a characteristic gene “fusion”, in which parts of two genes join into one, most often involving EWSR1. This distinguishes Ewing sarcoma from similar tumours.
To see how far the disease has spread, doctors use MRI of the affected area, CT of the lungs, PET-CT or a bone scan, and bone marrow samples. Treatment intensity depends on whether the tumour is confined to one place or has spread, and on its size.
How treatment works: three phases by protocol
Treatment runs in three phases: chemotherapy, then surgery or radiotherapy, then more chemotherapy. The first phase, induction, is several cycles of combination chemotherapy (several drugs together) to shrink the tumour and destroy unseen deposits. It all takes months, but between cycles the patient can usually stay at home or in a nearby flat.
The second phase is local control: surgery, radiotherapy or both. The tumour board – surgeon, oncologist, radiation oncologist, radiologist and pathologist – decides according to the tumour’s location and its response to chemotherapy.
The third phase, consolidation, adds further cycles to secure the result. For some high-risk patients, high-dose chemotherapy with return of their own stored stem cells is discussed. In Germany, children and teenagers are treated under trial protocols and registries of the Society for Paediatric Oncology and Haematology (GPOH), and adults follow the same principles: the German guideline on Ewing sarcoma in children and adolescents covers them too. Fertility preservation is discussed before the first cycle: sperm freezing for young men, ovarian tissue freezing for young women.
Surgery and radiotherapy: saving the limb
Surgery aims to remove the whole tumour and save the arm or leg. The tumour is removed with a margin of healthy tissue and the biopsy track; the missing bone is replaced by an endoprosthesis, a metal implant often including the joint, or the patient’s own bone. Growing children may receive “growing” endoprostheses that are lengthened as they grow. Amputation is rarely needed today.
Radiotherapy is used when the tumour cannot be fully removed, as sometimes in the pelvis or spine, and after surgery if the margin was too narrow or the response to chemotherapy poor. Proton therapy is gentler on surrounding tissue and the growing body; more on proton therapy in Germany.
Where Ewing sarcoma is treated in Germany: the Munich centres
In Munich, Ewing sarcoma is treated at the LMU and Technical University hospitals, and children also at the children’s centre of München Klinik Schwabing. At Dr. von Hauner Children’s Hospital (LMU), its Director, Prof. Christoph Klein, a paediatric haematologist and oncologist, leads the LMU paediatric cancer centre. The Schwabing children’s centre of the municipal hospital is headed by Prof. Julia Hauer and includes paediatric oncology.
Orthopaedic oncology is provided at Rechts der Isar Hospital of the Technical University of Munich, where Prof. Rüdiger von Eisenhart-Rothe heads the Department of Orthopaedics and Sports Orthopaedics; in 2010 he founded an orthopaedic working group on osteo-oncology (bone oncology) there. The Department of Internal Medicine III (Haematology and Oncology), led by Prof. Florian Bassermann, is part of the Comprehensive Cancer Center Munich (CCCM) of the city’s two universities.
Adults are also treated at the Comprehensive Cancer Center Munich LMU, whose sarcoma centre SarKUM cares for patients of all ages. Ewing sarcoma treatment in Germany is thus led by one team from biopsy to follow-up, not by separate doctors in turn.
Frequently asked questions
Can Ewing sarcoma be cured?
Yes. With modern treatment many patients are cured, though no one can predict the outcome in advance. The chances depend mainly on whether there are distant deposits at diagnosis, the tumour’s size and its response to chemotherapy. Only the treating doctor can judge them in an individual case.
How long does Ewing sarcoma treatment take?
Overall, treatment takes about ten months, sometimes longer depending on many factors. This covers chemotherapy before surgery, local treatment and the cycles after it. A family coming from abroad should plan the visa, accommodation and parents’ leave for the whole course from the start.
What happens if Ewing sarcoma comes back?
First, all records should be reviewed at a Ewing sarcoma centre: much depends on where and when the disease returned. There is no single standard for a relapse; usually different chemotherapy is given and, where possible, deposits are treated again with surgery or radiotherapy. New drugs are tested only in clinical trials.
How are patients followed up after treatment?
With regular check-ups over many years: doctors monitor the tumour site, lungs and skeleton, since a relapse is most likely in the first years. Late effects on the heart, kidneys and reproductive organs are also watched for, and children are helped back to school, sport and everyday life.
How AlenMed arranges Ewing sarcoma treatment in Germany
AlenMed organises everything around the treatment, starting with the documents: image discs, the biopsy report and, if available, paraffin tissue blocks for review. After translation, the centre’s doctors say whether the tissue needs review and at which phase treatment begun at home can continue.
AlenMed’s office is in Munich. For the months of treatment, AlenMed helps with a long-term visa, finds a flat for the family near the hospital, and provides an interpreter at appointments and cycles and contact with the doctors in between; more on airport pick-up and accommodation. Costs are set out in the hospital’s estimate (Kostenvoranschlag) for the specific treatment plan.
This material is for information only and is not an offer. The treatment plan is set by the doctor at an in-person consultation.
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