More than one in four patients with a rare cancer are first diagnosed with a cancer that has already spread, according to a new report from the Rarer Cancer Forum, which warns that these patients are experiencing "unacceptable" delays in diagnosis.
The charity's survey of 322 patients with rarer forms of the disease found that more than four in ten waited for more than three months between noticing symptoms and seeking medical help. Once they had sought help, nearly one third of patients were reassured and not asked to return to see their GP at the end of an appointment and over half reported that they had to visit their GP on more than two occasions before receiving a correct diagnosis. Nearly two thirds of patients responding to the survey experienced a delay of at least three months between first visiting their GP and receiving a correct diagnosis.
Late diagnosis is a major reason for England's poorer cancer survival rates when compared with many other countries and is more common in patients with rarer forms of the disease. A recent report by the National Cancer Intelligence Network found that more than one in four patients with a rare cancer were first diagnosed following an emergency, equating to 29,500 patients. More common cancers are much more likely to be diagnosed following a referral to a specialist by a GP.
People diagnosed with cancer at an early stage have a greater range of treatments to choose from, which are often less invasive and offer a better chance of a positive long-term outcome.
On a positive note, almost half (46.9%) of patients surveyed by the Forum who went to their GP were referred to a specialist and two thirds of patients referred were seen within two weeks, indicating that efforts to shorten cancer waiting times have been successful. The Government has asked the National Awareness and Early Diagnosis Initiative - a project aimed at improving early diagnosis - to include rarer cancers within its remit.
The report notes that, given the non-specific nature of many signs and symptoms of rarer cancers, it can be difficult for both the public and healthcare professionals to identify them and take appropriate action. Its recommendations include improving public awareness of the potential signs of rarer forms of cancer, providing greater support to GPs in recognising symptoms and ensuring that they have access to the necessary diagnostic tools and referral pathways to enable a prompt diagnosis.