What you need to know about blood cancer

Blood cancer is the fifth most commonly diagnosed cancer in the UK, and our third biggest cancer killer, and yet misunderstandings about the signs and symptoms of this cancer exist. We’ve spoken to the experts to explain the symptoms of blood cancer, diagnosis and how to improve awareness.

The symptoms

The Make Blood Cancer Visible survey, launched this September for Blood Cancer Awareness Month, finds that nearly a third of people wrongly believe headaches, nausea and double vision might be signs of blood cancer, which they are not.

The most common signs are fatigue, fever or night sweats, bone and joint pain, swollen glands, bruising and unusual bleeding.

Moreover, a second survey (Blood cancer: What you need to know CARE patient survey) reveals that 80% of patients admit they didn’t expect their symptoms to be blood cancer, prior to diagnosis. Indeed, a third had never heard of their specific condition and knew nothing about it.

Boost up your awareness about blood cancer

Last year, the former Lib Dem leader, Nick Clegg’s son Antonio, now 15, was diagnosed with the same condition as Ellie. He visited his GP with a painless lump on the side of his neck, and fortunately his GP sent him for scans and a biopsy. This quick assessment improved Antonio’s chances, and like Ellie, he too is now in remission.

While cancer is relatively rare in young people, each year blood cancer is diagnosed in around 1,100 people up to the age of 24 in the UK, and someone is diagnosed with blood cancer (or a related disorder) every 14 minutes.

Blood cancer is an umbrella term for cancers affecting the blood, bone marrow and lymphatic system (the vessels that transport white blood cells throughout the body). There are 137 types of blood cancer, the main three being: leukaemia (the uncontrolled growth of undeveloped white blood cells), lymphoma (cancer of the lymphatic system) and myeloma (cancer of the bone marrow).

These different subtypes typically affect people at different ages, but lymphomas (including Hodgkin’s lymphoma, as experienced by Ellie), are the third most common type of childhood cancer, while acute lymphoblastic leukaemia is one of the few forms of cancer that is more common in children than in adults.

Diana Jupp, Chief Executive of Bloodwise (formerly Leukaemia & Lymphoma Research) saya: “Despite 230,000 people being affected by blood cancer across the UK, it is still a much-misunderstood and little-known disease area. We know that low awareness can lead to late diagnosis and can make it hard for people to find the information and support they need, leading to a greater sense of isolation.” She hopes the campaign will change that by helping to raise awareness and make blood cancer ‘visible’.

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Diagnosis and treatment of blood cancer

More importantly, perhaps it will lead to earlier diagnosis and treatment. Currently most patients are treated with a combination of chemotherapy drugs, but new therapies are starting to emerge.

“Many different types of treatment are becoming available due to recent advances in our understanding of blood cancers. These include treatments that control or mimic the immune system, and treatments that are targeted for the characteristics of the cancer cell,” says consultant haematologist, Dr Jane Stevens, a Bloodwise Trustee.

“Over 8 in 10 survive blood cancers such as Hodgkin lymphoma and childhood acute lymphoblastic leukaemia. People should seek medical advice if their symptoms are unexplainable, unusual and persistent – in other words, they have been experienced for more than two weeks or if there is unexplained weight loss. The fatigue experienced is usually disabling and not helped by sleep or resting. Symptoms will feel more intense than a usual cold or flu and will not normally respond to antibiotics.”

A National Cancer Patient Experience survey shows that blood cancer patients generally have to see their GP more times before finally being diagnosed, which may be due to the symptoms being ‘vague’. However, diagnosis can be made through a simple blood test.

Ellie’s blood cancer story

Ellie Philpotts, 21, from Kidderminster, is typical in this respect. When, at the age of 14, she began to suffer breathlessness, cancer couldn’t be further from her mind.

“It started small-scale – I felt a little more fatigued than normal, but soon it escalated. Walking up the road to school was a massive struggle, I was breathless, had drenching night-sweats and a lump in my neck.”

She knew something was amiss, but suspected ‘flu, a winter virus or glandular fever.’ Her GP referred her to hospital for scans and a biopsy, which revealed Hodgkin’s Lymphoma – a type of blood cancer that mostly affects young people.

By now 15 and in Year 10 of her GCSEs, the diagnosis came as a huge shock.

“I went to the GP expecting the problem to be much less serious. I was aware of how it might affect other areas of my life, such as my education and future ambitions, but at the same time I was also a little relieved that my illness now had a name, meaning I could get on with treatment and the recovery process.”

Four months of chemo ensued, during which time Ellie pressed on with her studies.

“I was determined to keep up-to-date with my education, as I felt I still had an element of control over this area of my life. Of course, sometimes it wasn’t possible for me to make it to school, but I took revision books to chemo sessions, and saw an in-hospital tutor during my early days on the ward. This gave me a focus and something else to dedicate my energies to alongside treatment.”

Battling hair loss, nausea and tiredness (the side-effects of chemo), Ellie ‘powered through’, bolstered by the opportunity to connect with other young people in her situation.

“I tried to remember my end goal. My protocol [treatment] finished in the May, and I sat some GCSE exams during that month and June. I tried to stick to a routine as best as I could. It was also beneficial connecting with others in similar situations, through charities and the hospital itself. Meeting teenagers who’d also been diagnosed with cancer inspired me and made me feel more positive and less alone.”

Her hard work paid off, and Ellie, recently graduated from Cardiff University with a degree in Journalism, Media and English Literature. She has been in remission since 2011, and believes her timely diagnosis made all the difference.

Ellie, who is currently job-hunting, is spending time volunteering to help raise awareness.

“My biggest message to others going through what I went through, is hope. It might not always seem it, but things can get better. You’re definitely not alone – there are a range of incredible support systems throughout the country, and that means opportunities to try new experiences or give back, so aim to say, ‘yes’ to things if you get the chance.”

If you need support or information about blood cancer, head to Bloodwise or Anthony Nolan.


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