Like many forms of very rare cancer, EHE may be new to your oncology team. Many oncologists, and associated scanning and imaging departments, have not encountered the disease. This can lead to patients facing difficult diagnoses, leaving them feeling frightened and isolated.
In addition to its rarity, and because the natural history of EHE is not well understood, the understanding of the management and treatment of this disease is at an early stage only. Confident prognosis is therefore difficult with different patients responding differently to the same drug regimen.
Accessing EHE and sarcoma experience
If you are based in the UK and have recently been diagnosed with EHE, or it has been suggested as a possible diagnosis, it is important that you are referred to a recognised sarcoma unit, if you are not already being treated at one. Your medical team will refer you to the appropriate sarcoma centre for your area. EHE is a very rare form of sarcoma and it is important therefore that you are treated by specialists in sarcoma who will be connected into the sarcoma network and will be able to seek EHE experience from other UK specialists when and if required.