Leukaemia

Cancer of the blood-forming cells. The acute kinds move in days and the chronic kinds in years, and they are almost different illnesses.

What it is

Cancer of the cells that make blood, in the bone marrow. Abnormal white cells crowd out the normal ones, which is why the symptoms are the consequences of running short: anaemia, infection and bleeding.

There are four main types and grouping them together is misleading. The acute types, acute myeloid and acute lymphoblastic leukaemia, develop over days to weeks and need treatment straight away. The chronic types, chronic myeloid and chronic lymphocytic leukaemia, can develop over years, and chronic lymphocytic leukaemia is often found by accident on a blood test and may need no treatment at all for a long time.

Being told there is a cancer and also that nobody is going to treat it is one of the hardest things to sit with, and watch and wait is the standard, evidence-based approach in chronic lymphocytic leukaemia rather than neglect.

Acute lymphoblastic leukaemia is the commonest childhood cancer, and survival in children is now high.

Signs you might notice

Tiredness and breathlessness out of proportion to activity. See anaemia.

Repeated or unusually severe infections, or infections that do not clear.

Bruising easily, bleeding gums, nosebleeds, or a rash of tiny red or purple spots that does not fade under a glass.

Fevers, drenching night sweats, unexplained weight loss.

Bone or joint pain, particularly in children.

Swollen lymph nodes in the neck, armpit or groin. See lymphoma.

Any fever in somebody having chemotherapy is a medical emergency. Neutropenic sepsis kills quickly and needs antibiotics within the hour. Go straight to the number on the alert card. See sepsis.

How it can affect day-to-day life

Treatment for acute leukaemia is intense and long, with weeks in hospital, and it takes over a family's life for months.

Infection risk changes everything for a while: crowds, ill visitors, gardening, undercooked food, and pets all have to be thought about, and the person feels cut off precisely when they most need people.

Fatigue after treatment lasts far longer than anybody expects, often a year or more.

For children, schooling, friendships and development all have to be actively protected rather than assumed. For teenagers and young adults, specialist age-appropriate services exist and are worth asking for.

Watch and wait in chronic lymphocytic leukaemia brings its own anxiety, and support is often not offered because no treatment is happening.

Supporting someone well

Take the alert card everywhere and use it. A temperature during chemotherapy means straight to hospital, not a GP appointment and not the morning.

Learn the glass test for a non-fading rash, and act on it.

Ask which type it is, and write it down. The name determines everything that follows.

Ask about a clinical trial. Blood cancer trials are numerous and access varies.

Protect against infection sensibly rather than fearfully; ask the team exactly what applies to this person now, as it changes through treatment.

Ask for the clinical nurse specialist and for psychological support, including during watch and wait.

Ask about fertility preservation before treatment starts, for adults and for children. It is time-critical and easily missed.

Where to get help

A GP practice for the symptoms above; a full blood count is a simple and fast test.

The haematology team's emergency number for any fever during treatment.

Blood Cancer UK on 0808 2080 888 for information and support.

Leukaemia Care run a 24-hour helpline on 08088 010 444.