Last week NICE published its revised Guidance for Suspected Cancer. Long awaited. Publication was held up because of the general election – why medical guidance should be politicised in this way only bureaucrats can tell you.

The sarcoma community had a sense of trepidation about this publication because the old guidance for GPs about sarcoma symptoms was being jettisoned. Its not that the old guidance could be regarded as particularly effective, nor indeed has there ever been a formal evaluation of it to provide evidence, its just that familiarity has a certain comfort. The British Sarcoma Group had reaffirmed the NICE guidelines when it published its own Guidance five years ago.

Now the GP is expected to have a suspicion of sarcoma based on the fact that the patient has a lump which is growing in size. It may be deep, it may be painful, or not. In certain circumstances that patient should be referred to a tertiary specialist centre immediately (on a 2-week wait) but if the GP has several possible alternative diagnoses he should refer for a ‘direct access’ ultra-sound scan (for soft tissue sarcoma) or x-ray (for bone sarcoma). ‘Direct access’ means that the GP receives the x-ray/scan reports and is responsible for follow-up action. The GP can prioritise that referral as ‘urgent’ (must be done within 2 weeks) or ‘very urgent’ (completed within 48 hours)if the patient is a child.

Because the new Guidance is symptom based and gives a GP access to diagnostic tests we can anticipate that the number of GP visits a patient makes (typically 5 or more) will reduce. We can also anticipate that the number of benign lumps sent to specialist centres will reduce. However we can also anticipate that ultra-sound may create new problems. Most ultra-sound services offered for GP direct access are from the private sector. They are often staffed by NHS radiographers but even so few ultra-sonographers will have experience of diagnosing sarcoma. How well their scans are reviewed by trained radiologists is irrelevant because few radiologists understand sarcoma either.

Thus we can anticipate the potential for two effects, one welcome and one unwelcome.

The welcome effect will be a reduction in the number of benign tumours being referred to sarcoma specialist centres.

The unwelcome one is the potential for a rise in late diagnosis and A&E diagnosis of sarcoma because “false negative” information has been given to a GP, who has also inappropriately re-assured the patient.

We shall keep a close eye on the NHS data on referral pathways in the coming years to see if the latter concern does appear.

Sarcoma UK’s initiatives on raising sarcoma awareness and using the idea of a golf ball as a suspicion indicator seem to be having an effect, although it is still too early to try and evaluate that through what is happening in specialist centres. The BMJ OnLine Learning Module developed by the team in Liverpool is freely available through Sarcoma UK’s support. There are pressures within the British Sarcoma Group to reduce the size of the suspicious lump to 40mm (currently 50mm) and the new approach by NICE opens the way for this.

What is happening through the charities and what NICE is offering fit well together, hopefully opening up the way for a general improvement in sarcoma diagnosis.

I do have one small complaint about the new NICE Guidance. In its glossary it defines sarcoma as:

A particular type of cancer, usually affecting muscles or bones.

I think that this is inaccurate, glib and pathetic. It has about as much value as saying “Dogs are a particular type of animal, usually with a leg at each corner”.  It is sloppy original writing, bad editing and deficient clinical oversight, regardless of the context in which it is published, in this case a glossary.

What does “particular type” mean? “Usually” is non-specific and has different implications for each reader’s understanding. About 50% of all sarcomas are visceral (GIST, gynae, retroperitoneal, abdominal). Most paediatric sarcomas affect muscle or bone but in adults bone sarcomas are uncommon. There are vastly greater numbers of adults than children diagnosed with sarcoma.

We need major organisations to take sarcoma seriously, so NICE (and others) please note that a more accurate and useful description is needed in the future.