Statistics and outlook for myeloma

Following on this page is information about the survival rates of myeloma. We have included it because many people have asked us for this. But not everyone who is diagnosed with a cancer wishes to read this type of information. If you are not sure whether you want to know at the moment or not, then perhaps you might like to skip this page for now. You can always come back to it.

Please note: There are no national statistics available for different stages of cancer or treatments that people may have received. The statistics we present here are pulled together from a variety of different sources, including the opinions and experience of the experts that check each section of CancerHelp UK. We provide statistics because people ask us for them. But they are only intended as a general guide and cannot be regarded as any more than that.

There is a section explaining more about the different types of cancer statistics in the CancerHelp UK section on cancer statistics. Unless you are very familiar with medical statistics, you may find it helpful to read this before you read the information below.

Remember - statistics are averages based on large numbers of patients. They cannot predict exactly what will happen to you. No two patients are exactly alike and response to treatment also varies from one person to another.

 You should feel free to ask your doctor about your prognosis, but not even your doctor can tell you for sure what will happen. You may hear your doctor use the term ‘5 year survival’. This does not mean you will only live 5 years. It relates to the number of people in research who were still alive 5 years after diagnosis. Doctors follow what happens to people for 5 years after treatment in any research study.

As with many other types of cancer, the outcome depends on how advanced your cancer is when it is diagnosed. In other words, the stage of your myeloma. Another important factor in myeloma is your age and fitness, and the type of treatment you have. There are some very intensive treatments available for myeloma and you have to be well enough to get through them if your doctor is going to consider them for you. Doctors do not discriminate on grounds of age - it really is your fitness that is the issue.

Overall, about 59 out of every 100 people (59%) diagnosed with myeloma in England and Wales live for at least a year after diagnosis. About 23 out of every 100 (23%) live for at least 5 years. And about 12 live for at least 10 years.

Like all survival statistics, these relate to people diagnosed some time ago - in this case, up to 2001. The picture may have improved since then. Figures from another source say that about 29 out of every 100 people (29%) diagnosed will live for at least 5 years. Another source says that even after the myeloma has been treated and then come back again, about 22 out of every 100 (22%) live for at least another 5 years after this first relapse.

Remember - myeloma can be very variable in how it behaves. In some people, it develops very slowly and so the prognosis will be better. You really need to discuss this with your own specialist. It may be a while before your doctors can say how your myeloma is likely to behave. They will have to see how things go and how the disease responds to treatment before making an educated guess at your likely outlook.

If you are under 70 and well enough for intensive treatment, the picture is better. At least half of this group (50%) will live for at least 5 years. About 20 out of every 100 of them (20%) will live for at least 10 years.

There are other factors that can affect your prognosis, apart from the stage of your cancer. One consideration is how well you are overall. Doctors call this your ‘performance status’. You may see this written PS. A score of 0 means you are completely able to look after yourself. A score of 1 means you can do most things for yourself, but need some help. The scores continue to go up, depending on how much help you need. This is relevant to survival because overall, the fitter people are, the better able they are to withstand their cancer and treatment. This is particularly important in myeloma because fitter patients can withstand more intensive treatment.

There are several blood tests that have significance for the likely development of your myeloma. Your specialist will talk you through these. One test is called beta 2 microglobulin. A low level of this means your myeloma is less active and so is likely to develop more slowly. Another test is called serum albumin - a higher level for this is linked to a better outlook. There are many other tests, including chromosome tests.

It is a good sign if your myeloma responds well to treatment and goes into complete remission. This means that there is no clinical sign of your disease and no longer any abnormal immunoglobulin in your blood or urine. Remission can last for months or years, but unfortunately the myeloma is likely to come back eventually and need further treatment.

No statistics can tell you what will happen to you. Your cancer is unique. The same type of cancer can grow at different rates in different people for example. The statistics are not detailed enough to tell you about the different treatments people may have had. And how that treatment may have affected their prognosis. Some treatments may help people to live longer as well as relieving symptoms. There are many individual factors that will determine your treatment and prognosis.

Research evidence shows that taking part in clinical trials may improve outlook. No one is completely sure why this is. It is probably partly to do with your doctors and nurses monitoring you more closely if you are in a trial. For example, you may have more scans and blood tests. There is more information in the trials and research section of CancerHelp UK.