Breast cancer; lung cancer; even brain cancer – the majority of us can understand the concept of a solid tumour growing silently and malevolently in one of our internal organs.
Yet, say leukaemia to people and while they will surely have heard of it, are they able to explain what it is? And do they know that there are both acute and chronic forms of the blood cancer, affecting different age groups and with very different outcomes?
According to the latest data available from the National Cancer Registry of Ireland, over 400 cases of leukaemia are diagnosed in Ireland each year and it accounts for one in 40 deaths in cancer, yet a lack of awareness around the condition persists.
At the recent European Haematology Association Congress in Milan, Italy, results from a survey exploring public awareness and perceptions of one form of leukaemia, acute myeloid leukaemia (AML), illustrated a lack of understanding surrounding the disease.
People didn’t know what age group it affected, or how it is usually treated, and two-thirds of the survey respondents said they thought of blood cancers as being highly treatable. Indeed, certain types are, yet the prognosis for AML remains poor and it is responsible for over 40 per cent of deaths from leukaemia.
According to the Irish Cancer Society’s Naomi Fitzgibbon, leukaemia is a more complex concept to grasp than other cancers. “We explain that it is a cancer of the white blood cells and bone marrow, but it is complicated as it is a whole science in itself.”
Fitzgibbon also notes that the initial symptoms – pain in the joints, bleeding gums, headaches – are quite vague and non-specific. Coupled with the lack of awareness, the patient may thus take a while to be diagnosed.
She adds that leukaemia is a less common cancer, so unless people know somebody with the disease, they tend not to understand it.
Consultant haematologist Dr Eibhlin Conneally of St James’s Hospital agrees, and says that, in her experience, the idea that they have a cancer in their blood is harder to grasp for some people when they receive a diagnosis. “If you talk about breast cancer or lung cancer, the likelihood is that they will know somebody who has had one of those diseases.
“They think of it as a defined type of cancer, whereas leukaemia is a bit more abstract, and there are acute and chronic forms of the condition, so it’s quite a complicated topic,” she explains.
Conneally says she explains to patients that with acute leukaemias, people tend to get sick quite rapidly and require intensive chemotherapy, whereas with chronic leukaemias, people get sick over a longer period of time and can mostly be managed as an outpatient. “For patients who develop chronic myeloid leukaemia or chronic lymphoid leukaemia, there are still some patients who will die from their illness but most patients will simply live with their disease for many many years.”
Results from the UK arm of the European survey found that most people believe leukaemia mainly affects children and young people.
This isn't true but it is the most common cancer in children, says Dr Aengus O'Marcaigh, consultant in paediatric haematology at Our Lady's Children's Hospital, Crumlin.
Outcomes for children diagnosed with leukaemia have improved dramatically, however, he explains.
“It’s still a highly emotive term but this is a good news story. Over the past 30 years, we have gone from a 10 per cent cure rate to 90 per cent,” he says.
Ireland’s participation in international clinical trials of novel drugs also means that children get access to the newest and most effective therapies, according to O’Marcaigh.
“While only about 20 per cent of cancer patients in Ireland have access to clinical trials, for leukaemia this is more like 90 or even 100 per cent.
“It’s up to parents and only with their consent. If they don’t want their children receiving the newer drug, they can remain on the standard treatment.”
Children receiving treatment for their leukaemia will usually go home after a two-week initial stay and then continue treatment as an outpatient.
“These children’s lives are almost normal. After six months their hair grows back and they look like any other child, and we tell the parents that we expect them to go to school, we expect them to go on school tours with their class, and really get back to as normal a life as possible.
“Twenty years ago we kept kids in hospital because of fears of infection but we have become much better at recognising infections early now.”
Crumlin has now begun to offer at-home chemotherapy – an initiative that won the hospital an Irish Healthcare Award last year.
“We train parents to deliver the intravenous chemotherapy at home and it has worked brilliantly. Not all parents are comfortable with it but for those who have done it, it has worked very well. It saves them travelling to the hospital.”
O’Marcaigh adds, however, that there is a proportion of children for whom the chemotherapy simply doesn’t work.
“They will need the really tough chemo and possibly a bone marrow transplant. A lot of our focus at the moment is recognising these children earlier and escalating their treatment more quickly.”
The main problem with leukaemia is that its cause, or causes, remain unknown, despite tireless research in the area. “There is no single preventable cause is the one thing we can say,” says O’Marcaigh.
Leukaemia: the facts
Blood: Contains plasma, white blood cells, red blood cells and platelets
White blood cells: Also known as leukocytes. Responsible for fighting infection
Red blood cells: Also known as erythrocytes. Responsible for transporting oxygen in the blood.
Platelets: Also called thrombocytes. Responsible for blood clotting
Leukaemia: Group of cancers that originate in the bone marrow and cause increased numbers of white blood cells (leukocytes)
Acute lymphoblastic leukaemia (ALL) Most common in children and adolescents but can also occur in adults aged 75 years and over
Acute myeloid leukaemia (AML): Incidence increases as people age, highest prevalence in over-65 age bracket
Chronic lymphoblastic leukaemia (CLL): This is the most common form of leukaemia in adults
Chronic myeloid leukaemia (CML): Rare cancer that commonly affects middle- aged adults between the ages of 45 and 55. Very rare in children