Myelodysplastic syndrome (MDS)

 Myelodysplastic syndrome (MDS), also called myelodysplasia, is a type of blood cancer. It's rare and mostly affects people over 70 years old. 

 What is myelodysplastic syndrome (MDS)? 

• Myelodysplastic syndrome (MDS), also called myelodysplasia, is a rare type of blood cancer. It affects your bone marrow, which is the tissue inside your bones that makes blood cells.
• There are several different types of MDS, depending on things like the number and type of blood cells that are affected.
• MDS often develops slowly, over several years, and may not need treatment straight away.
• It cannot usually be cured, but the symptoms can often be managed with treatment.
• Some people with MDS go on to develop another type of blood cancer called acute myeloid leukaemia (AML).
• How serious it is depends on the type of MDS, the risk of getting AML and your general health.

 Symptoms of myelodysplastic syndrome (MDS) 

Main symptoms of myelodysplastic syndrome (MDS)

Symptoms of myelodysplastic syndrome (MDS) are not always obvious and can be similar to other conditions.

You may not have any symptoms in the early stages. Sometimes it's found when you have a blood test for another reason.

If you do have symptoms, they can include:

• feeling tired or weak
• feeling breathless when you do light exercise
• bleeding more than usual (such as having frequent nosebleeds, bleeding gums or heavier periods) or bruising more than usual
• getting ill a lot or taking longer than usual to recover from illnesses
• looking paler than usual – this may be less noticeable on brown or black skin
• a rash that looks like small bruises or bleeding under the skin and does not fade when you roll a glass over it, similar to meningitis

Symptoms are usually mild at first and slowly get worse.

 See a GP if: 

• you think you could have myelodysplastic syndrome (MDS)

 Important 

Some of these symptoms are common and can be caused by many different conditions.

Having them does not definitely mean you have MDS. But it's important to get them checked by a GP.

This is because if they're caused by cancer, finding it early means treatment is more likely to be successful.

What happens at your GP appointment

The GP may ask to examine you.

They'll ask about any other medical conditions or treatments you've had.

They may arrange for you to have a type of blood test called a full blood count.

Referral to a specialist

You may get an urgent referral for more tests or to see a specialist in hospital if the GP thinks you have symptoms that could be cancer.

This does not definitely mean you have cancer.

 Causes of myelodysplastic syndrome (MDS) 

Who is more likely to get myelodysplastic syndrome (MDS)

Anyone can get myelodysplastic syndrome (MDS).

It's not known what causes MDS in most people. Rarely, it can be caused by chemotherapy or radiotherapy treatment for another type of cancer.

You might also be more likely to get it if:

• you're over 70
• you're a man
• others in your family have had it, or have had acute myeloid leukaemia (AML)
• you've worked with the chemical benzene (used in the rubber industry, and found in petrol and cigarette smoke)
• you have certain genetic conditions such as Down's syndrome

It's important to get any symptoms of MDS checked by a GP.

 Tests and next steps for myelodysplastic syndrome (MDS) 

Main tests for myelodysplastic syndrome (MDS)

If a GP refers you to a specialist (haematologist), you may need some tests to check for myelodysplastic syndrome (MDS).

Tests may include taking a small sample from your bone marrow (the tissue inside your bones) using a needle, to be checked for cancer. This is called a bone marrow biopsy.

If you have a bone marrow biopsy, you'll usually have a local anaesthetic to stop you feeling any pain. You may also be given medicine to help you relax (sedation).

Getting your results

It can take a few weeks to get the results of your tests.

You may be asked to go to the hospital to get your results, or they may be sent to you in the post.

Try not to worry if your results are taking a long time to get to you. It does not definitely mean anything is wrong.

You can call the hospital or GP if you're worried. They should be able to give you an update on when you'll get your results.

When you get your test results, a specialist will explain what they mean and what will happen next. You may want to bring someone with you for support.

If you're told you have MDS

Hearing that you have MDS can feel overwhelming. You may be feeling anxious about what will happen next.

A group of specialists will look after you throughout the diagnosis, treatment and beyond.

The team includes a clinical nurse specialist (also called a specialist haematology nurse). They will be your main point of contact during and after treatment.

If you have any questions, the clinical nurse specialist will be able to help.

Macmillan Cancer Support has a free helpline that's open every day from 8am to 8pm.

They're there to listen if you have anything you want to talk about.

Next steps

If you've been told you have MDS, you may need more tests.

These may include genetic tests on your bone marrow samples.

These tests will help the specialists find out:

• the type of MDS you have
• your risk group, from very low risk to very high risk – this is based on how quickly your symptoms are expected to get worse, and the risk of MDS developing into another type of cancer called acute myeloid leukaemia (AML)

The team will talk to you about options and help you decide on the best treatment plan, based on which type of MDS you have, your risk group and your symptoms.

 Treatment for myelodysplastic syndrome (MDS) 

Main treatments for myelodysplastic syndrome (MDS)

Myelodysplastic syndrome (MDS) often develops very slowly. You may not need treatment straight away.

Treatment will depend on:

• your symptoms
• the type of MDS you have
• how quickly your symptoms are expected to get worse, and the risk of MDS developing into acute myeloid leukaemia (the risk group)
• your age
• your general health

If you have low risk MDS and few symptoms you'll usually just have regular check-ups, including blood tests. You may need treatment in the future if your condition gets worse.

If you have higher risk MDS, treatment may include chemotherapy or a stem cell transplant. You may also have medicines called immunosuppressants, targeted medicines or immunotherapy.

You'll also have treatments to prevent and manage symptoms (called supportive treatments).

The specialist care team looking after you will:

• explain the treatments, benefits and side effects
• work with you to create a treatment plan
• help manage any side effects

You'll have regular check-ups and tests during and after any treatments.

If you have any symptoms or side effects that you're worried about, talk to your specialists. You do not need to wait for your next check-up.

Chemotherapy

Chemotherapy uses medicines to kill cancer cells.

It's one of the main treatments for higher risk MDS.

You might have chemotherapy before having a stem cell transplant (called intensive chemotherapy).

Or you might have a type of chemotherapy that causes fewer side effects, if stronger chemotherapy or a stem cell transplant are not suitable for you (called non-intensive chemotherapy).

Stem cell transplant

A stem cell transplant replaces the damaged stem cells in your bone marrow with healthy ones from a donor.

It can sometimes cure MDS, but it's not suitable for everyone. It may be recommended if:

• you have lower risk MDS and other treatments have not worked
• you have higher risk MDS and you're in good health apart from your MDS

Immunosuppressants

Immunosuppressants are medicines that reduce the activity of your immune system.

They can be used to treat certain types of MDS.

Targeted medicines and immunotherapy

Targeted medicines kill cancer cells.

Immunotherapy is where medicines are used to help your immune system kill cancer.

These medicines are used to treat certain types of MDS. The main treatment is a medicine called lenalidomide, which can help with symptoms and reduce the need for supportive treatments such as blood transfusions.

Supportive treatment

You may also need to have supportive treatment to prevent or control symptoms caused by MDS.

This is usually:

• blood transfusions to increase your number of healthy blood cells
• medicines called growth factors to help your body make more blood cells
• antibiotics if you need treatment for infections

What happens if you've been told your cancer cannot be cured

If you have advanced MDS it might be very hard to treat. It may not be possible to cure the cancer.

If this is the case, the aim of your treatment will be to limit the cancer and its symptoms, and help you live longer.

Finding out the cancer is advanced and cannot be cured can be very hard news to take in.

You will be referred to a special team of doctors and nurses called the palliative care team or symptom control team.

They will work with you to help manage your symptoms and make you feel more comfortable.

The clinical nurse specialist or palliative care team can also help you and your loved ones get any support you need.