The NHS operates a system of standard treatments. There is a body of published guidance about any illness to which any consultant called on to treat it should refer. However soft tissue sarcoma is rare enough (about 1300 cases a year) and LMS even rarer (under 200 cases a year) that most general surgeons and GPs will never come across a single case during their career and even cancer specialists in general hospitals are unlikely to very often. 

Sadly there are cases of misdiagnosis by pathologists and instances where consultants have relied on their general knowledge of cancer, rather than getting the latest guidance on treatment. Different parts of the country operate different practices in referring patients for confirmation of diagnosis and applicable treatment at an experienced sarcoma centre, so it is more likely that an error will take place if such a centre is not consulted.

LMS is a rare disease and treatment options are being tested all the time. There are specialist sarcoma teams in very few places. The busiest are at the Royal Marsden in London, the Royal Orthopaedic in Birmingham and the Christie Hospital in Manchester. All operate a multi-disciplinary team system with medical oncologists, surgeons, experienced pathologists and consultant radiologists. The other main centres tend to be in university hospitals (Middlesex, Nottingham, Sheffield, Leeds and Newcsatle are the ones we know of).

The importance of being seen by one of the specialist teams is not just that they will be able to confirm a diagnosis. They also have access to the latest worldwide thinking about what treatment is most applicable. They are also involved in both national and European programmes of clinical trials and the drug companies regard them as the centres of excellence for testing new drugs. A listing of open trials funded through government or charity routes (but not drug company trials) is available in the &&url.

Remember that a second opinion is the right of every NHS patient. There is a culture in the UK of not wanting to make a fuss, and there are many in the medical profession who appear to do everything they can to discourage second opinions. It may take time to get an appointment but it is worth asking to be referred for a second opinion at one of the major sarcoma treatment centres if you have any doubts at all.

