Updated 12 Apr 2019

The main symptoms you get with ALL are caused by not having enough normal blood cells, because there are too many blast cells in your bone marrow.

Symptoms of ALL

Updated 12 Apr 2019

Common symptoms of ALL include:

Fatigue (extreme tiredness)

Fatigue is a kind of tiredness that lasts a long time and doesn’t improve with rest. It’s caused by a low number of red blood cells in your blood (a low red blood cell count). The medical name for this is anaemia. Anaemia can also make you feel breathless, even when you’re resting, and lead to chest pain.

Bruising and bleeding

This is caused by a low number of platelets in your blood (a low platelet count). Platelets are the blood cells that stop bleeding by making the blood clot.

A low platelet count can mean:

  • bruising easily
  • bleeding from your gums or nose
  • bleeding from wounds, which is hard to stop
  • black, tarry poos or poos that are streaked with red, because of bleeding in your gut
  • headaches, difficulty speaking or difficulty moving parts of the body, because of bleeding into the brain.

Infections

This is caused by a low number of white blood cells. A low white blood cell count can lead to infections and fevers that last for longer or happen more often than normal.

Weight loss

This is caused by a high metabolism, which is the rate you burn energy from food. We don’t completely understand why the metabolism speeds up in people with ALL.

Other symptoms

You or your doctor may also notice that your lymph nodes (glands) are larger than normal. You may notice these in your neck, but they could be in several places around your body, such as your armpit or groin. Your doctor may also feel a swollen liver or spleen (the organ that sits under your ribs and filters your blood) when they examine your stomach area (abdomen). In T-cell ALL, swollen lymph nodes in the chest might show up on an X-ray.

It’s important to remember that many of the symptoms seen in ALL can also happen in people who have common conditions which are less serious.

Because leukaemia is rare but the symptoms are common in other diseases, it sometimes takes a week or two to diagnose. But if your doctors suspect leukaemia, they’ll act quickly to make sure you get the tests and treatment you need.

Tests and diagnosis

Updated 16 Apr 2019

Your healthcare team will order laboratory tests to confirm whether you have ALL, and what type of ALL you have. They start by looking at the bigger picture, and then focus in on your exact diagnosis.

It can be hard to understand how doctors know you have leukaemia, when there’s nothing like a lump you can see, as you might get with other cancers. Your doctors diagnose leukaemia by looking at your blood, your bone marrow and your genes. They will need the results of several tests to confirm a diagnosis of ALL.

Full blood count (FBC)

A full blood count (FBC) measures the number of each type of cell in your blood: red blood cells, white blood cells and platelets. Your GP may send you for this test because you’re unwell and they don’t understand why, or you might have one as part of a routine check-up.

If your FBC shows that you may have ALL, you’ll need to go to hospital for more tests. If you’re diagnosed with ALL, you’ll have regular FBCs to monitor your condition during and after treatment.

Normal blood film

A diagram showing normal blood film

Abnormal blood film

A diagram showing abnormal blood film

Bone marrow biopsy

Your doctors will probably want to take a sample of your bone marrow by a procedure called a bone marrow biopsy. This is the most accurate way of diagnosing the type and level of leukaemia you have.

Sometimes it’s not possible to make a diagnosis from a blood sample alone, because there may be leukaemia cells in your bone marrow which aren’t circulating in your blood yet. Testing your bone marrow is also useful at this point because it can be used to compare your blood cells after treatment to see how well the treatment has worked.

A bone marrow biopsy gives your doctors more information about:

  • the structure of your bone marrow
  • the types of blood cell in your bone marrow
  • the number of blood cells in your bone marrow (too many or too few).

The results can also tell them if the blood cells in your bone marrow are cancerous.

Find out more about having a bone marrow biopsy.

Cytogenetics

People with blood cancer will have changes in the genes of cells affected by the cancer. These changes aren’t the type to be passed on through families. They are only found in the affected cells, such as leukaemia cells. The study of these gene changes is called cytogenetics or molecular genetics. Cytogenetic tests are usually done on cells from your blood or from your bone marrow, before you start any treatment.

Information about these gene changes is very important. It’s these cytogenetic tests that will tell your healthcare team what type of ALL you have (B-cell or T-cell, Philadelphia positive or negative), and therefore what your treatment is likely to be.

Immunophenotyping or flow cytometry

Immunophenotyping, also called flow cytometry, looks at the pattern of proteins on the surface of leukaemia cells. This can confirm a diagnosis of ALL and tell your doctor exactly which type of ALL you have. Find out more.

Blood tests

Liver function tests

This is a blood test to check if your liver is working normally. It’s very important if you need chemotherapy, as many drugs are broken down in the liver. If your liver isn’t working normally, it might be necessary to adjust your dosage.

Urea and electrolytes test

This is a blood test to check how well your kidneys are working. The results will help your doctors work out the doses of drugs you need. It’ll also show if you’re lacking fluids (dehydrated) and show any damage that may have been caused either by the cancer or your treatment. You’ll usually have your kidneys checked every time you have an appointment at the hospital.

Infection screening

When you’re diagnosed with ALL, you’ll also have a general health check-up. This will help work out if you’ll be particularly vulnerable to side effects from treatment. You’ll have a range of tests to check your heart, liver and kidneys. It’s also routine to be tested for HIV, hepatitis B and hepatitis C, so that if you have these conditions without knowing, they can be treated at the same time as the ALL.

Tissue typing

Tissue typing is a blood test that’s routinely done when someone’s diagnosed with ALL. It checks your white blood cells for proteins called HLA markers. If you need a stem cell transplant using cells from another person (a donor) as part of your treatment, this information is used to make sure the donor’s stem cells are a close match to your own, which lowers the risk of problems following the transplant.

Other tests

Depending on how well you are after you’re diagnosed, your healthcare team may want to do more tests. These tests aren’t routine, and some aren’t necessarily done at diagnosis, so don’t worry if your healthcare team doesn’t suggest you have them right away.

Lumbar puncture

Leukaemia cells can get into the fluid that cushions your brain and spinal cord. This fluid is called the cerebrospinal fluid, or CSF. A lumbar puncture is a test to see if there are leukaemia cells in your CSF. To treat this or prevent it happening, the procedure may also involve anti-cancer drugs (chemotherapy) being introduced to your CSF.

The doctor inserts a thin needle into your spine, to collect a sample of the fluid. You’ll have a local anaesthetic to numb the area first. After fluid has been collected, drugs used to treat ALL may be injected through the needle. These drugs are safe to give in this way. Your doctor will tell you if you need this treatment.

It’s likely that you won’t have a sedative to make you feel sleepy during a lumbar puncture, as it’s useful for patients to be awake to report any symptoms.

Often, you won’t need a lumbar puncture when you’re first diagnosed, but you’ll generally need several in the course of your treatment.

Imaging (scans)

  • X-ray: You may have an X-ray when you’re first diagnosed, to check for infection or any other chest problems.
  • CT or CAT scan: This is not a routine test during the diagnosis and treatment of ALL but there may be specific reasons it needs to be done, such as if you have a swollen liver or spleen when you are diagnosed.
  • MRI scan: An MRI scan is not a routine test during diagnosis and treatment of ALL, but there may be specific reasons for having one. For example, it may be done to check if there are signs of ALL in the brain or the fluid around the brain.
  • PET scan: It’s rare to have this test, but it may be done if doctors suspect there are leukaemia cells in your lymph nodes (glands), liver or spleen.

If you're diagnosed with ALL

Updated 12 Apr 2019

Your healthcare team

Your hospital will give you the names and contact details of your healthcare team. Get in touch with them if you have any questions you want to ask when you’re not at the hospital.

Remember to tell other healthcare professionals you see – like your dentist or optician – about your diagnosis and any medication you’re taking. They may need to check with your specialist or GP before giving you some types of treatment.

Talking about your diagnosis

Many people find it helpful to talk to someone who’s had the same diagnosis and treatment, or to contact a support organisation. You could consider joining our online community, or contact our Support Services Team.

Staying informed

Take some time to think about how much information you want, when you want it, and how you want it to be given to you. Read our information on finding out more about your condition.

Telling others

It’s entirely up to you who you tell about your illness, but people often find it helpful to keep their loved ones informed. It may also be a good idea to tell someone at work about your diagnosis. See our tips on telling others about blood cancer.

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