Diagnosing sarcoma

The diagnostic experience of many sarcoma patients is disappointingly slow. GPs rarely see a sarcoma case - on average a GP will only see one in a whole career - so they are not usually quick to suspect sarcoma. The guidelines provided by the NHS for GPs are very simple. Patients presenting with a lump with one or more of the following symptoms should be referred to a specialist:

The question of to whom the GP refers the patient is left to local guidance, or to the GP themselves. Frequently this will be a general surgeon or an orthopaedic surgeon at the nearest general hospital. Where symptoms occur on head and neck, or are evident in other locations (eg gastro-intestinal) a specialist in that area is more likely to see the patient. Some patients, but by no means all of them, will get to see a specialist sarcoma consultant or surgeon at the first referral.

The progress to a diagnosis is determined by the degree of suspicion of sarcoma raised by the consultant when the patient is clinically examined.

The definitive tests for diagnosing sarcoma are imaging (using ultra-sound, x-rays, CT scan or MRI scan) and/or a biopsy (taking a tissue sample from the lump and having it diagnosed by an expert pathologist). Too frequently it takes time to get these tests undertaken if there is no suspicion of sarcoma. It is important that both images and biopsy samples are checked by specialists with experience of diagnosing sarcoma. Many benign lumps can look similar to a sarcoma and they are much more common.

Once a diagnosis has been made surgery will be planned. This may take be undertaken by a specialist sarcoma surgeon or by a specialist from another discipline where tumours are affecting their area of speciality. Some specialist sarcoma surgeons also have a background in orthopaedic or plastic surgery.

The nature of some sarcomas means that they may not be diagnosed until there is an emergency, or until surgery for another actual or suspected condition is undertaken.

Osteosarcoma, particularly in more elderly people, may not be diagnosed until there is a fracture. Uterine sarcomas are unlikely to be diagnosed until after a hysterectomy. Many GIST (gastrointestinal stromal tumour) patients present with anaemia or as an emergency with internal bleeding.

Guidelines on the management, diagnostic and referral practice for sarcoma in the NHS are currently being drafted. It is hoped that they will be published in summer 2005 and implemented shortly thereafter. Progress of this work can be checked on the website of the National Institute of Clinical Excellence.