Doctors may carry out a number of tests in order to diagnose LCH. These tests are needed to see if the disease is 'single-system' or 'multi-system' and to determine the best form of treatment.
These include blood tests, x-rays, ultrasound scan, CT Scan, MRI Scan, biopsy and a water deprivation test.
All of these tests can take either a few days or a couple of weeks and may involve a stay in hospital.
LCH is different to cancer because it usually burns itself out - although we don't know how or why this happens. In some cases, the disease will go away by itself without any treatment. In other cases, treatment is needed to keep the disease under control and prevent too much damage. The treatment is tailored to the extent of the disease.
Treatment options can include surgery, steroids and chemotherapy.
A treatment protocol - a special plan detailing the proposed treatment - will be designed by the patient's oncologist or haematologist. There are agreed international protocols, developed over many years through large clinical trials and usually combine surgery, steroids and chemotherapy.