Early diagnosis and smoldering myeloma
We have seen that some people can have up to 30% of abnormal plasma cells in the bone marrow and a raised level of paraprotein in the blood, but no other physical symptoms. This is smoldering myeloma, which progresses slowly and will eventually develop into active myeloma.
Smouldering myeloma
Smouldering myeloma (less commonly known as asymptomatic myeloma) is an early form of myeloma, which usually progresses to active myeloma, but may take some time to do so. Smouldering myeloma does not normally cause symptoms, so it is often diagnosed by chance – blood tests may show an increased level of overall protein and this will usually prompt further investigation.
In most cases, it does not need treatment, but patients will be monitored at least annually and should have blood tests 3-4 times a year. During this time, it is important to watch out for pain, fatigue and weight loss, and to report these symptoms to your doctor. About one in 10 patients diagnosed with smouldering myeloma will develop active myeloma in the first year after diagnosis. About 3% will develop active myeloma in the following year and about 1% each year after that.
Smouldering myeloma is often diagnosed when a blood test, taken for other reasons, reveals a high level of overall protein in the blood, which will then be investigated further. A blood paraprotein level of 30g/L (grams per litre) or higher (or urinary protein of 500mg in 24 hours or higher), together with a level of 10-60% of abnormal plasma cells in the bone marrow, indicate a diagnosis of smouldering myeloma. There will be normal kidney function, no anaemia, no bone lesions and a normal level of blood calcium.
While no treatment is given for most smouldering myeloma patients, as the benefit is outweighed by the potential side-effects, a small proportion of patients can be at a high risk of developing active myeloma within the next 1-2 years. Active research is ongoing at this moment to establish what causes this higher risk. For these patients, early treatment may be beneficial and can delay progression to active myeloma. Treatment may be recommended if the level of plasma cells in the bone marrow, or free light chains in the blood, reach a high level, or if an MRI scan shows areas of bone abnormality.
Diagnosis challenges
Early diagnosis of myeloma has been shown to minimise disease complications and improve quality of life. However, the MPE report Myeloma Diagnosis Across Europe – The Diagnosis Experiences of European Myeloma Patients and Perspectives from European Haematologists highlighted early diagnosis is still a major barrier that needs to be addressed to improve patient experience and outcomes.
To find out the main reasons of the delay in myeloma diagnosis, MPE ran a survey, and several focus groups and interviews, in which more than 600 myeloma patients and 80 haematologists across Europe participated. According to findings, myeloma diagnosis can take over five months, require more than four medical consultations and involve visits to at least three different medical specialists.
The non-specific symptoms of myeloma (such as bone pain and back pain) were highlighted in the report as a central reason for delayed diagnosis. In particular, they act as a barrier to patients presenting to a general practitioner (GP) in the first place and make it difficult for GPs to diagnosis in a consultation. To help overcome this, MPE developed a Myeloma Diagnosis Pathway outlining the main signs and symptoms of myeloma and the tests and investigations that should be undertaken if myeloma is suspected. The Pathway is now translated into several European languages which are being disseminated by MPE members to GPs in each country.
Check out the different infographics on the myeloma diagnosis challenge, the signs and symptoms of myeloma, and more at this link. It is available in 26 languages.