Many patients with lymphoma take longer to be diagnosed than expected, with some thinking these delays could have been avoided, a new report from the University of York has found.
Many symptoms reported by patients are not included in UK referral guidance, a document available to help GPs identify suspected lymphoma. Current guidance focuses on the most common signs such as swollen lymph nodes, weight loss and night sweats, but many patients experienced a wider range of symptoms.
The latest National Cancer Patient Experience Survey, published in 2018, revealed that blood cancer is now the worse performing cancer in terms of early diagnosis, with 35.6 per cent of blood cancer patients visiting their GP three times or more before being referred to hospital – compared to 23 per cent of cancer patients overall.
The researchers said GP ‘safety netting’ could help reduce diagnosis delays for patients whose symptoms have ‘low cancer risk’ and so are not immediately referred to hospital, but not ‘no cancer risk’. This involves making sure patients know when to expect their symptoms to get better and what to do if they don’t.
They suggest that ‘vague’ and ‘unexplained’ symptom pathways are developed to manage these patients. They also said the public should have a good understanding of their own ‘normal’ and be encouraged to seek help if this changes.
Around 14,000 people are diagnosed with lymphoma, a cancer of the white blood cells that affects the immune system, each year in the UK.
The study was carried out by researchers at the University of York and included in-depth interviews with 35 lymphoma patients and their relatives about their experiences leading up to diagnosis.
Symptoms that patients reported experiencing varied significantly, but often included extreme tiredness and ongoing infections. Researchers noted that patients often put vague symptoms down to the aging process, stressful lifestyles or depression. Patients didn’t know much about the signs of lymphoma and did not suspect it as a cause of their symptoms.
The study, which was funded by the blood cancer charity Bloodwise and Cancer Research UK, is published online today (Tuesday 29th January) in the British Journal of General Practice.
Patients said that, often despite a lot of effort, their GPs struggled to identify the cause of their symptoms. Few GPs considered lymphoma as a likely explanation for symptoms at first, particularly when these were subtle or developed slowly. Alternative explanations, similar to those initially considered by patients, were often suggested.
Some patients thought that their GPs did not want to send them for blood tests or scans, either because they did not want to ‘overload the system’ or pay for tests or because they did not think the hospital would take the referral due to symptoms not being severe enough.
When tests were requested, patients said these were often inconclusive or normal, highlighting the need for better ways of identifying lymphoma early. Some thought their GP should have known more about lymphoma, its symptoms, and the meaning of test results.
The study was carried out by the Hematological Malignancy Research Network (HMRN: www.hmrn.org), a collaboration between doctors and nurses at 14 hospitals across Yorkshire and Humberside and researchers at the Department of Health Sciences, University of York. HMRN was established to produce evidence to improve patient care. It has been funded by Bloodwise since it began in 2004.
It can be very difficult for GPs to decide when relatively common symptoms, such as tiredness or infections, could potentially indicate lymphoma. If the cause of symptoms is uncertain, it is important that strategies are put in place to encourage patients to talk to their GP about this, particularly if the problem is getting worse."
Professor Russell Patmore, One of the study authors, – A Hematology Consultant at Castle Hill Hospital in Hull and Visiting Honorary Professor at the University of York.
Patients and GPs can easily put the symptoms of blood cancers like lymphoma down to the aging process or harmless conditions. It’s vital that GPs are made aware of the signs that could indicate blood cancers and that patients are reassured that it’s OK to keep seeking help if they continue to experience unusual, ongoing or unexplained symptoms."
Dr Alasdair Rankin, Director of Research and Patient Experience, Bloodwise.
This research highlights that lymphomas often present with non-specific symptoms, which could also be signs of less serious illnesses. This creates a challenge for both patients and GPs. On average a GP will only see a new case of lymphoma once every three years, and during that time will have around 24,000 consultations.
NICE guidelines are helpful in suggesting which symptoms should be properly evaluated such as enlarged lymph glands, particularly if these are accompanied by other symptoms such as persistent tiredness or unexplained weight loss, fever, shortness of breath or night sweats. Another challenging aspect is that blood tests will often be normal in patients with lymphoma. The Royal College of General Practitioners, in collaboration with Cancer Research UK, run education events for GPs and some of these cover the blood cancers, to raise awareness of the importance and significance of blood cancers, and equipping colleagues with the information and systems to enable earlier diagnosis."
Dr Richard Roope, Cancer Research UK’s GP Expert.