The hidden killer that can even fool doctors
Blood cancers: hard to detect & tough to beat; people need to recognise the signs.
Over the years, critical conditions such as heart disease have been labelled “silent killers”. Blood cancers go a step further – they are “hidden killers” with often life- changing impacts on the lives of patients and those close to them.
September is Blood Cancer Awareness Month – a vital reminder to look for symptoms that can often fool even some medical professionals.
Every day three people die of blood cancer in New Zealand and eight cases are diagnosed. There is an estimated 21,000 people living with blood cancer ( including leukaemia, lymphoma, myeloma, MDS and MPN). The disease can strike anyone, at any age and often with little warning, and can take months or even years ( especially with children) to combat.
Unlike other forms of cancer, there are over a hundred blood cancer types and sub-types, there is no known cause and symptoms are often mistaken for other conditions.
Blood cancers are difficult to detect and difficult to cure – and their impact can often be damaging not only to the patient but also their family and support networks, says Emma Barker of Leukaemia & Blood Cancer New Zealand.
“We often have patients tell us it can take months to get a diagnosis, because symptoms are often dismissed as other, unrelated conditions; correct, prompt diagnosis can be tricky.”
Symptoms include persistent fatigue, frequent fevers, repeat infections, unexplained weight loss, itchy skin, excessive night sweats, anaemia, unusual bruising, bone pain and swollen lymph nodes. Usually a person will experience more than one; Barker says clusters of symptoms should trigger people to seek medical advice.
Barker, the Head of Support Services and Operations at Leukaemia & Blood Cancer New Zealand, wants people to be aware of potential symptoms and to selfadvocate if they feel they might be affected.
She says there is no early screening that can pinpoint blood cancer, compared to other cancers, meaning people have to be aware of their own health: “Should those flu- like symptoms still be there after all this time? Are you exhausted from everyday life when life hasn’t changed? What is going on with that pain in your back?”
The dangers are clear. Blood cancers are the fourth most common cancer in New Zealand. Leukaemia is the most common childhood cancer and lymphoma the second- most- prevalent cancer in 15-24- year- olds,
“Blood cancer has hidden impacts,” she says. “Treatment is long and hard; often people have to travel large distances for specialist treatment. Many leave home to be treated – so you might have a mum with a sick child in Starship Hospital in Auckland, while dad is at home far away with the other kids.
“Some have to negotiate long leave from their jobs while they are treated – so you can have the breadwinner having extended time off work for life- saving treatement; it can be very stressful for families. There are all these pressure points – jobs, relationships, split families, travel – and that’s not even taking into account the blood cancer itself and that anxiety and the fear around relapse.”
Patients are prone to relapse, says Barker, and it’s not easy to win the battle. Many patients find they go through a rollercoaster of remission and relapse; many describe it as ‘living with a life sentence’.
“You can imagine the strain that causes on people, families and relationships. We also commonly hear that people with occupations that demand a lot of energy may have to find new jobs. We hear of farmers and teachers, for example, who have to change their jobs because they need a role that requires less energy or less exposure to potential infection while they are dealing with blood cancer.”
That tendency to relapse means blood cancer patients also have to live with a large helping of anxiety and uncertainty – yet another pressure point. There are also ongoing long-term side effects of treatment such as fatigue, peripheral neuropathy and joint deterioration, among other things.
Yet all of the above can be eased with better detection and good support post-treatment, even though the nature of blood cancer makes that more difficult than other forms of cancer. Awareness Month will include various forms of publicity plus a Blood Cancer Patient Forum, held online on September 4 ( now a virtual event after lockdown), with 20 speakers covering the latest news and various survivorship topics.
Most people who come to Leukaemia & Blood Cancer New Zealand for support have usually noticed things just haven’t been right for some time and have that cluster of symptoms. In some cases, Barker says, people might need to fight hard to find out the underlying cause or have a GP who recognises this could be something more serious.
“We also want to support medical professionals to understand the symptoms and learn to spot them early,” she says. “We know GPs have a lot to consider in a consultation. So if a patient is showing more than one of the symptoms, they should consider a more comprehensive blood test that can lead to diagnosis.
“Leukaemia & Blood Cancer New Zealand is here to support people with blood cancer and is committed to help research to find a cure.”
Awareness Month runs from September 1- 30. For more information: www.leukaemia.org.nz/