Should I see a myeloma specialist?

Myeloma is a type of cancer that develops from cells in the bone marrow called plasma cells. It is a rare cancer. There are about 4,000 cases diagnosed in the UK each year.

It can be very difficult for GPs to decide who may have a suspected cancer and who may have something much more minor that will go away on its own. With many symptoms, it is perfectly right that your GP should ask you to wait to see if they get better or respond to treatment such as antibiotics. If GPs referred everyone who came to see them to a specialist immediately, the system would get jammed and those needing urgent appointments wouldn't be able to get them.

There are particular symptoms that mean your GP should refer you to a specialist straight away. NICE (the National Institute for Health and Clinical Excellence have produced guidelines for GPs to help them decide which patients need to be seen urgently by a specialist. These NICE guidelines on referrals for myeloma were revised in 2005. While reading these guidelines, it is important to remember that

• Nearly everyone diagnosed with myeloma is over 50
• Fewer than 2 in every 100 people diagnosed (2%) are under 40
• The most common symptom is bone pain, which may affect more than 7 out of 10 people with myeloma
• Other common symptoms are fractures, kidney problems and symptoms from a low red blood cell count (anaemia) such as tiredness and breathlessness
• Myeloma is rare - on average, a GP will only see about 2 cases during their career

According to Department of Health guidelines, you should ideally get an appointment within 2 weeks for an urgent referral. You should be seen straight away by a haematologist if your doctor suspects you could have myeloma, and you also have

• Signs of kidney failure or
• Symptoms that suggest the myeloma could be pressing on your spinal cord (spinal cord compression)

If myeloma affects the bones of the spine and puts pressure on the spinal cord, it can cause

• Loss of feeling or weakness in your legs
• Worsening back pain
• Difficulty in controlling your bladder or bowel

If you have a combination of the following symptoms, the guidelines say your GP should fully examine you, take blood tests and possibly refer you on to a specialist. The blood tests should at least include a blood cell count and examination of the blood cells on a slide (this is called a 'film'). Whether to refer you, and how soon, will depend on the combination of symptoms you have, how bad they are, and on your test results. The list of symptoms include

• Bone pain
• Fatigue
• Being short of breath
• Bruising easily or bleeding
• Infections that keep coming back
• Weight loss
• Night sweats

You may have more blood tests than the two basic ones for particular symptoms. Do bear in mind that some of these symptoms can be caused by other less serious medical conditions and do not always mean that you have myeloma. The doctor's experience will help them to work out who may be showing signs of a serious illness and who is more likely to have something more minor that will go away on its own.

The guidelines suggest more in depth blood tests for particular symptoms such as

• Tiredness for no reason that doesn't go away or get better
• Bruising or bleeding for no reason
• Bone pain that doesn't go away

If the tests don't show anything the first time round, your GP may repeat them if the tiredness still doesn't improve. We haven't specified the blood tests here because they vary between symptoms. You can talk to your GP about what the guidelines recommend in your case.

If you are concerned that your GP is not taking your symptoms as seriously as you think he or she should, you could print this page and take it along to an appointment. Ask your GP to talk it through with you and then you may be able to decide together whether you need to see a specialist and if so, how soon.