As with any cancer, early diagnosis of blood cancer helps optimise management and patient experience1 – even if management means ‘watching and waiting’. However, few red flags warn of early stage blood cancers and any symptoms are typically vague and clinically ambiguous.2 This may explain why avoidable delays occur in 27.3% of myeloma cases, 26.3% of lymphoma cases and 14.7% leukaemia cases in the UK.3
Understandably, such delays can cause patients and their families considerable distress.3,4,5,6 A higher index of suspicion among GPs and the wider primary care team for blood cancers when patients present with some of the common symptoms, could reduce delays, improve outcomes and reduce distress.7
Make Blood Cancer Visible 2019 aims to improve earlier diagnosis by making people aware of the symptoms of blood cancer. The campaign is sponsored by Janssen and supported by nine blood cancer patient support groups. Visit www.makebloodcancervisible.co.uk
This article was initiated, funded and reviewed by Janssen UK
Delayed presentation and diagnosis
Taken together, blood cancers were diagnosed in 27,902 patients in England during 2017.8 Non-Hodgkin's lymphoma (NHL), leukaemia and multiple myeloma (including malignant plasma cell neoplasms) accounted for most of these (12,065, 8,567 and 5,034 cases respectively).8
To put these figures in context, blood cancers were the sixth most commonly diagnosed cancers in the UK, behind breast (46,109), prostate (41,207) lung (38,906), colorectal (34,825) and digestive tract (31,360).8
A study based on semi-structured interviews with 20 people living with myeloma in the UK and 12 of their relatives found that patients took between one and seven months after noticing a change in their health before seeking help from a healthcare practitioner.4
Similarly, semi-structured interviews with 35 people with lymphoma and 15 relatives found that patients took between 0.5 and 13 months after noticing a change before seeking help.5
The time from help-seeking to diagnosis of myeloma varied from two weeks to 17 months.5 The median time from help-seeking to lymphoma diagnosis varied from 2 months (range 2-10 months) for mantle cell lymphoma to 12 months (range 3-25 months) for marginal zone lymphoma.5 Understandably, many patients expressed dissatisfaction in this delay. Twelve of the 20 patients felt that their myeloma diagnosis was delayed.4
Despite accounting for 9.1% of all cancers,8 diagnosing blood cancer is often difficult in primary care – partly because individual conditions are relatively rare. According to Leukaemia Care, GPs see, on average, one blood cancer case every two years.9
The lack of distinctive symptoms is the main reason why detecting blood cancers early usually proves so difficult.2 We learned in medical school that lymph node pain after drinking alcohol is a specific symptom of Hodgkin's lymphoma,10 which may emerge before there is palpable lymph node enlargement. This symptom is, however, uncommon.
Given the rarity of some blood cancer types and the lack of distinctive symptoms, it’s perhaps not surprising that we may misattribute symptoms to more common ailments. Back pain – which, with the benefit of hindsight, was due to myeloma – may be treated as mechanical and prescribed analgesics and anti-inflammatories and suggested consulting with a physiotherapist or osteopath.4
GPs are aware of the risk of less common differential diagnoses. Clinical or radiological bone involvement is present in about 1% of adults with acute lymphoblastic leukaemia (ALL), for example.11 However, bone and joint pain may be a presenting symptom in 25% of children with acute leukaemia.11 So, GPs should always investigate when a presentation does not seem ‘right’ for that patient, based on their knowledge of the person and their family.
Looking for clinical clues
GPs need to be aware of the tests available in their area. NICE recommends measuring urinary concentrations of Bence-Jones protein (free light-chains) as a diagnostic test for myeloma.12 However, measuring serum levels of free light chains may offer additional insights.13
One study that monitored 82 patients with light-chain myeloma reported that urine became negative for free-light-chains in 26 patients, but remained abnormal in serum in 73 patients.13
Even blood tests are not definitive. Nevertheless, tests can reassure patients and GPs and facilitate an agreed management and safety netting plan whether or not the diagnosis confirms cancer.
Early diagnosis and rapid referral are the foundations of blood cancer management. NICE’s guidance on suspected cancer: recognition and referral sets out a referral pathway for leukaemia, myeloma and non-Hodgkin’s and Hodgkin's lymphoma.
The award-winning GatewayC Cancer Maps, approved by NICE and the RCGP, is an interactive online tool that helps clinicians assess possible cancer symptoms during consultations. The programme produces a visual mind map of the most likely differential diagnoses and the suggested actions based on symptoms, age and sex. GatewayC, a free, online, educational website also includes several excellent educational modules covering myeloma, chronic leukaemia and lymphoma diagnosis.
A summary of the educational materials and referral tools available to help support primary care professionals in recognising blood cancers is available at http://www.makebloodcancervisible.co.uk/healthcare-professionals.
We all need to maintain a high level of suspicion for blood cancers even if the increasing workload makes finding the time to make a considered diagnosis difficult. We should encourage safety netting for patients where there is uncertainty, reviewing at appropriate intervals and documenting that this has been done.14 Fortunately, a growing range of resources can help GPs diagnose blood cancers rapidly and refer patients quickly, which should help improve outcomes.
- Dr Pawan Randev, FRCGP is a GP and GP trainer in Leicestershire and primary care lead for East Midlands Cancer Alliance
This feature has been funded by Janssen UK as part of the Make Blood Cancer Visible campaign and written on the company’s behalf by M&F Health, based on an interview with Dr Pawan Randev. The views expressed in this feature are his own and don’t represent any other entity.
- WHO. Guide to Cancer Early Diagnosis. 2017.
- Bloodwise. Over half of Brits don’t know symptoms of blood cancer. 31 August 2018.
- Swann R, McPhail S, Witt J et al Diagnosing cancer in primary care: Results from the National Cancer Diagnosis Audit. Br J Gen Pract 2018; 68: e63-72.
- Howell DA, Hart RI, Smith AG et al. Myeloma: Patient accounts of their pathways to diagnosis. PLOS One 2018; 13(4): e0194788.
- Howell DA, Hart RI, Smith AG et al. Disease-related factors affecting timely lymphoma diagnosis: A qualitative study exploring patient experiences. Br J Gen Pract 2019; 69: e134-45
- National Cancer Patient Experience Survey. 2017 Reports.
- APPG on Blood Cancer. The Hidden Cancer. January 2018.
- Office for National Statistics. Cancer registration statistics, England: 2017. April 2019.
- Leukaemia Care. Can you spot leukaemia?
- Cancer Research UK. Hodgkin Lymphoma. Symptoms. Available at: https://www.cancerresearchuk.org/about-cancer/hodgkin-lymphoma/symptoms. Last accessed September 2019.
- Garg G, Chawla N, Gogia A et al. Low backache in adults as an initial presentation of acute lymphoblastic leukemia. J Family Med Prim Care 2017; 6: 434-36.
- NICE. Suspected cancer: recognition and referral. NG12. July 2017.
- Bradwell AR, Carr-Smith HD, Mead GP et al Serum test for assessment of patients with Bence Jones myeloma. Lancet 2003;361:489-91.
- Nicholson BD, Mant D, Bankhead C.Can safety-netting improve cancer detection in patients with vague symptoms? BMJ 2016; 355: i5515.
Initiated, funded and reviewed by Janssen UK.
Date of preparation: November 2019