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 usually they do not 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. Cancer Networks and Primary Care Trusts provide a 'pathway' which the GP should initiate for each patient by referring to a diagnostic centre. 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.

This situation has been improving in recent years following the publcation by the National Institute og Health and Clinical Excellence of 'Improving Outcomes Guidance' for people with sarcome. Prior to this referral practice was inconsistent and widely recognised as unsatisfactory. Although systems are not yet fully in place every Cancer Network in England and Wales clear points for referral for suspected sarcoma are largely in place. This will still leave the GP to suspect sarcoma, and where he does not suspect it, the hospital doctor to whom he sends the patient for diagnosis, will need to suspect it, so there is still room for failure to diagnose and delay in getting peoper treatment.

The progress to a diagnosis is thus determined by the degree of suspicion of sarcoma raised by the GP, or by the first 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 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 specialist radiologists and pathologists with experience of diagnosing sarcoma. Many benign lumps can look similar to a sarcoma and they are much more common. There is a Royal College of Pathologists official network for quality control of sarcoma diagnosis and the pathologist should always be a member of this network.

Once a diagnosis has been made surgery will be planned. This may be undertaken by a specialist sarcoma surgeon or by a specialist from another discipline in those cases where tumours are affecting their area of speciality. Some specialist sarcoma surgeons also have a background in orthopaedic or plastic surgery. Surgery should be undertaken under the supervision of a sarcoma specialist multi-disciplinary team, even when the surgeon is not a regular member of that team.

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 first at hospital with anaemia or as an emergency with internal bleeding.

The NICE Improving Otcomes Guidance for the NHS have been published and the final implementation of the recommendations is currently underway. It is expected to be in place by autumn 2011. Download the public summary of the recommendations, the full recommendations, and the full manual produced by NICE. Other documents are also available on the NICE website.

Page reviewed December 2009