Leukaemia survival rates depend on where you live – study

Survival rates for people who have chronic lymphocytic leukaemia – the most common form of the illness, vary depending on where they live according to a new study.

The study led by Professor Chris Fegan the Chair of the Scientific Committee of the Welsh cancer charity Cancer Research Wales has been published by the Haematologica.org website.

It shows that CLL patients from the more affluent parts of Cardiff and the Vale of Glamorgan live almost twice as long after treatment as those who are from poorer areas.

“Twice as likely”

Patients from more disadvantaged areas are almost twice as likely to have an advanced stage of CLL when they are diagnosed, according to the findings.

They reveal that 17% of these patients from more deprived areas are at an advanced stage of the illness compared with 9% of patients from affluent areas.

Professor Chris Fegan, who is also a recently retired haematologist said: “Despite patient care being conducted by the same clinical teams at the University Hospital of Wales (UHW), with access to the same treatments, it was found that patients from the poorest communities in Cardiff lived on average 5 years less than patients from the least deprived areas, even when diagnosed at a relatively early stage of the leukaemia.

“It is currently unknown why CLL patients from more deprived areas succumb to their illness quicker than patients from elsewhere once treatment is initiated, but the presence of other co-morbidities – such as heart and lung disease may be a contributing factor

Co-existing conditions like these tend to limit the therapeutic options that patients can be given and the doses that they are able to tolerate, which may contribute to reduced survival.”

It is estimated there are over 1,000 patients living with CLL in Wales currently.

The leukaemia typically occurs after the age of 60, with over a third of patients never requiring any treatment for the condition.

New therapies

For those that do require treatment, the introduction of new therapies within the last decade has ensured better outcomes for most patients, with many surviving longer than 10 years.

Dr Lee Campbell, Head of Research at Cancer Research Wales, commented: “4 February 2024 was Word Cancer Day and this year’s theme was ‘Closing the Gap’ to raise awareness of unacceptable cancer inequalities. This study shows that such inequalities occur close to home.

“The fact that it is happening within Wales’s capital city is inexcusable. Welsh Government and associated stakeholders need to make a radical commitment towards real progress in addressing this issue, which has been longstanding and is only likely to get worse in the current economic climate.”

The reasons for the poorer outcomes for patients from deprived communities uncovered in this study are currently unknown but are likely to be a combination of multiple factors.

These may include a lack of awareness of symptoms (which tend to be vague and include night sweats, weight loss and fatigue), poorer overall health, a reluctance to visit the GP or a reluctance to miss work for medical reasons due to financial pressures.

Case study

Elvis Aaron Gannon – a 57-year-old male from Barry in the Vale of Glamorgan was diagnosed with chronic lymphocytic leukaemia at the age of 52 in 2018.

He received treatment for his illness from a clinical trial which gave hope for him and his family.

Following intentional weight loss through diet when he lost three stone, one day his partner Nikki noticed prominent lumps in his neck.

Eventually persuaded to go to the doctor by his family, Elvis visited his GP who promptly took blood tests.

He said: “For two years prior to diagnosis I noticed that I bled for longer periods and more profusely than normal whenever I scratched myself but put it down to just getting a bit older.

“I was very eventually diagnosed with chronic lymphocytic leukaemia in 2018 after I’d gone on a diet and lost three stone in weight.

“My partner Nikki noticed lumps around my neck that had become quite prominent after the weight loss. I was eventually persuaded by my family to go and see the GP.

“The doctor took some blood and tested it and rang me two hours later at 6.00pm to say there were abnormalities in my blood as the blood cells were misshapen.”

‘Watch and wait’

Upon the identification of abnormalities in the blood, the GP quickly referred Elvis to the haematology department at University of Wales Hospital, and he was assessed by the same consultancy team who undertook today’s study.

Following further blood tests and a biopsy, a diagnosis of chronic lymphocytic leukaemia was made.

“I felt fine when I had the diagnosis – I thought, ‘They’ll deal with it’. I didn’t lose any sleep about it and that’s the truth of it.

“I was worried about losing my hair, but my family were worried about losing me. I kept telling them ‘Don’t panic’.  My family were devastated, and they thought the worst and were researching the illness on the internet, but I was quite calm.

“I was glad my partner Nikki and daughter Lisa-Marie were with me – they were doing all the worrying for me.

“I had to wait 12 months with check-ups to see how the illness was progressing – that’s the ‘Watch and wait’ approach that is quite common with cancers like chronic lymphocytic leukaemia. In October 2019 however, my leukaemia was waking up and I was offered to go on the FLAIR clinical research trial”.

Advice

The FLAIR study compared standard chemotherapy with novel non chemotherapy treatments. Elvis was randomised to receive a new class of therapy called Ibrutinib which works by stopping growth and survival signals in the malignant white B cells causing them to die.

“After six months on the trial, the cancer was basically gone but I still have my bloods checked every three months and I have an examination and I fill in forms every six months for the clinical trials” added Elvis  who is now clear of all leukaemia and keeping well and is continually monitored with check-ups every 3 months.

“When I went on the clinical trial, the specialist told me ‘If this doesn’t work, we’ve got other treatments here that we know do work’. The clinical trial gave me hope and the clinicians were surprised by how quickly the cancer cleared. The doctor told me ‘On paper, it’s gone” he said.

Elvis would urge everyone to seek advice if they notice anything unusual with their body or health and would encourage people to participate in clinical trials where offered:

“If someone else had been diagnosed with same illness as me and they’re invited to take part in a clinical trial, I would encourage them to do so because they could help others by helping to develop new treatments.

“I am happy that having been on the FLAIR trial, I’ve helped save lives. Not everyone is eligible to take part in clinical trials, but if you are, I’d strongly recommend you do it.”