Myelofibrosis
To find out if you have myelofibrosis your doctor will do several tests. They will also examine you and ask you questions about your general health and family history.
The first test to diagnose myelofibrosis is usually a blood test called a full blood count. This is to check the number of:
red blood cells
Most people with myelofibrosis have a low number of red blood cells. This is called anaemia. Red blood cells contain haemoglobin, and so your haemoglobin will also be low. Haemoglobin carries oxygen around the body. So, if you are anaemic, you may feel tired or breathless.
Many people with myelofibrosis might have a higher or lower than normal number of white blood cells and platelets at diagnosis. These usually drop as the condition progresses.
You might also have blood tests to look for changes. For example, in the JAK2 or CALR and MPL genes.
Doctors are learning more about genetic changes all the time. You might have tests for other gene changes.
Other tests you might have to help diagnose myelofibrosis include:
a bone marrow aspirate or biopsy
an ultrasound scan of your tummy (abdomen) - to check the size of your spleen and liver
an MRI scan
a CT scan
Your doctor might arrange for you to have other blood tests or scans if they need more information to confirm a diagnosis. They will let you know more about these tests if you need them.
Choose a test or scan from our A-Z page
There are particular factors that doctors use to work out whether your myelofibrosis is low, medium or high risk to your health. This is called the International Prognostic Scoring System (IPSS).
The Dynamic International Prognostic Scoring System (DIPSS) helps doctors work out your risk at any point during your myelofibrosis treatment.
These systems help your healthcare team decide on the best treatment for you.
There are 4 risk groups:
low risk
intermediate 1
intermediate 2
high risk
At diagnosis, your risk group depends on:
your white blood cell levels - a high one is higher risk
your haemoglobin - less than 100g/L is a higher risk
the number of blasts (immature blood cells) in your blood
your symptoms - for example if you have weight loss or sweats
your age - if you are over 65 years you are higher risk
Newer scores are sometimes available using particular changes inside the myelofibrosis cells. It may help to talk to your specialist about which scoring system they are using.
In general, low risk myelofibrosis can be kept under control for several years in some people. High risk myelofibrosis can be more difficult to treat.
The predicted outlook of myelofibrosis depends on many factors. It is best to discuss your outlook with your own specialist. They have access to all your test results and how they have changed over time.
Your treatment depends on a number of factors including:
your blood cell levels at diagnosis
your symptoms
the number of immature cells you have in your blood
your risk group
Your doctor can decide on the best treatment for you by looking at the scoring system and finding your risk group. They will also take into account your general health and any other medical conditions.
You might not need to start treatment if you don’t have symptoms. Instead, you have regular check ups, including blood tests to check your blood count.
Treatments might include one or more of the following:
You can’t have some treatments for myelofibrosis if you are pregnant. Your doctor will discuss this with you. They will explain the treatments you can have and the possible side effects.
Your doctor might ask you to take part in a clinical trial if one is available for your situation. Doctors and researchers do trials to make existing treatments better and develop new treatments.
Find out more about clinical trials
Your healthcare team might discuss ways to maintain a healthy lifestyle and help with stopping smoking if you need it.
We have information on healthy diet and lifestyle on our causes of cancer and reducing your risk pages.
Causes of cancer and reducing your risk
We have information on support organisations that can help you cope with the diagnosis and treatment of myelofibrosis.
Last reviewed: 05 Feb 2024
Next review due: 05 Feb 2027
Myelofibrosis causes scarring of the bone marrow which makes it more difficult to produce blood cells.
Coping with a rare condition can be difficult both practically and emotionally. Being well informed about your condition and possible treatments can make it easier to make decisions and cope with what happens.
Researchers around the world are looking at better ways to treat myelofibrosis and manage treatment side effects.
Myeloproliferative neoplasms are a group of rare disorders of the bone marrow that cause an increase in the number of blood cells.
Find out about tests to diagnose cancer and monitor it during and after treatment, including what each test can show, how you have it and how to prepare.
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