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Should I see a myeloma specialist?

Men and women discussing myeloma

This page tells you about the guidelines that GPs in the UK have. The guidelines help them decide who needs to see a specialist if they have symptoms that could be due to myeloma and how soon. You can go straight to sections about

 

A quick guide to what's on this page

Guidelines for urgent referral

Myeloma is rare and the symptoms can be similar to other medical conditions. So it can be very difficult for GPs to decide who may have myeloma and who has something less serious. But there are particular symptoms that mean your GP should refer you to a specialist straight away. According to the National Institute for Health and Care Excellence (NICE) guidelines, you should see a haematologist straight away 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. 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

Guidelines for non urgent referral

If you have a combination of symptoms such as bone pain, tiredness (fatigue), being short of breath, bruising easily or bleeding, infections that keep coming back, weight loss and night sweats, your GP should fully examine you, take blood tests and possibly refer you on to a specialist.

If you are concerned that your GP is not taking your symptoms as seriously as you think they should, you could print this page and take it with you to an appointment.

 

CR PDF Icon You can view and print the quick guides for all the pages in the about myeloma section.

 

 

How common myeloma is

Myeloma is an uncommon type of cancer that develops from cells in the bone marrow called plasma cells.

 

About UK referral guidelines

The symptoms of myeloma are similar to some other medical conditions. So it can be very difficult for GPs to decide who may have a myeloma 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 people needing urgent appointments wouldn't be able to get them.

The National Institute for Health and Care Excellence (NICE) has produced guidelines for GPs to help them decide which patients need to be seen urgently by a specialist. There are particular symptoms that mean your GP should refer you straight away.

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 (70%) 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
 

Guidelines for urgent referral

According to the National Institute for Health and Care Excellence (NICE) 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
  • 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
 

Guidelines for non urgent referral

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 much they affect you, and on your test results. The list of symptoms includes

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

It is important to 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 helps 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.

 

Who should have more tests

The guidelines suggest that you have particular blood tests for specific 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 symptoms don't improve. We haven't specified the particular 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 worried

If you are worried that your GP is not taking your symptoms as seriously as you think they 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.

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Updated: 21 November 2013