Preston gran ‘knew something was wrong’ before waiting 18 months for devastating diagnosis

Julia Jones was initially told a lump was swollen glands and her tiredness was age related

A Preston gran found out she had leukaemia 18 months after she first thought something was wrong.

Julie Jones received the devastating diagnosing more than one year after finding a lump under her arm. At first she was told the lump was raised glands and her extreme tiredness potentially linked to age as her GP didn’t appear to spot any link to leukaemia.

Julia, 74, said: “I had found the lump 18 months before my diagnosis and had seen the GP three times. It wasn’t until a routine mammogram that something was picked up. A blood test was not done before this to double check the cause of the symptoms.

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“It was thought I might have breast cancer, so a biopsy was taken. However, I was instead told I had chronic lymphocytic leukaemia (CLL).

“I was referred to a Haematologist in Blackpool and was put on watch and wait for a short time. The following year I had a chest infection and was admitted to hospital. I recovered well but shortly afterwards I found that I had trouble swallowing.

“I was referred to an ENT consultant and after examination I was found to have lymphoma in my tongue, throat and trachea. It was then decided that I needed some treatment.”

More than 10,000 cases of leukaemia are diagnosed every year with the disease claiming 5,000 lives annually. Survival stands at just over 50 per cent – making it one of the most deadly forms of cancer.

Julie continued: “I was fortunate enough to be offered the Flair trial, which consisted of six-monthly doses of rituximab and three tablets of ibrutinib daily for six years. I have just completed the trial and the indications are excellent: no CLL in my bone marrow and only some residual in my blood.

“I am still receiving four-weekly transfusions of immunoglobulins and I have been infection-free for about two years. I have a full and varied life and try not to think there is anything wrong with me.

“I feel very positive as I am in good hands and medical research is always moving forward. The future looks good.”

Julie spoke about her diagnosis as charities warned that patients are being misdiagnosed or waiting too long for a blood test. Those affected are said to face “the luck of the draw” – with GPs often left without adequate support.

Julie added: “I think it is important to raise awareness amongst not only the public but the medical profession, who may not be fully aware of the symptoms of the illness. If not many people with blood cancers are seen by GPs, it may not be immediately obvious to them. We all need to know what to look for and not be afraid to ask questions.”

Zack Pemberton-Whiteley, chief executive of Leukaemia Care, said: “A blood test is needed to rule out leukaemia. A full blood count [FBC] is a cheap, everyday test that can also help explore what other causes there might be for the patient’s symptoms.”

Early diagnosis saves lives, with people having a lower chance of survival if diagnosed in an emergency. Mr Pemberton-Whiteley said: “NICE guidelines clearly state that a full blood count is urgent when leukaemia symptoms are present, for any of these symptoms alone.

“It is imperative that GPs have the capacity and support to order and interpret blood tests. We are calling on the government to set out how they will increase GPs numbers, to adhere to these NICE guidelines.

“We also call on NHS bodies, both locally and nationally, to provide more support for GPs, such as better access to colleagues in haematology departments.”

While more than 10,000 cases are diagnosed every year, 37% of these are diagnosed in an emergency setting – reducing chances of survival. The highest such presentation rate for any cancer is acute lymphoblastic leukaemia (66 per cent) – the most common childhood cancer.

Patients are often too unwell to cope with the treatments for leukaemia, which are known to have a harsh effect on the body. The shock research coincides with World Leukaemia Day. The ‘Spot Leukaemia’ campaign is running throughout Blood Cancer Awareness Month.

Leukaemia Care and Leukaemia UK are calling for GPs to be supported properly to ensure prompt blood tests. The charities have found that patients are having to visit a medical professional multiple times before getting a blood test and subsequent diagnosis.

In many cases patients visit a GP multiple times with symptoms such as fatigue, bruising, unusual bleeding or repeated infections, before experiencing more severe symptoms and needing emergency A&E treatment.

A survey of 253 leukaemia patients found a third of reported being given a blood test straight away (within 48 hours) after first going to their GP with symptoms. One in seven (15 per cent) said they visited their GP more than three times before they were referred to hospital.

NICE guidelines for GPs in England call for GPs to organise an urgent blood test within 48 hours for people with unexplained bruising, extreme fatigue, repeated infections and unexplained fever. But the charities found around a quarter (23.5 per cent) of patients with acute leukaemias said it took three to four months to get a blood test. Only 68 per cent of people were given a blood test within 48 hours..

GPs face huge challenges – not only due to capacity issues but also due to the vast array of conditions, many of whose symptoms overlap, that they must try to diagnose. Staffing issues have deterred some from offering blood tests.

Analysing the results will take time that they simply don’t have. GPs told the charities they often lack capacity to fully interpret the blood tests and processes regarding blood test interpretation are inconsistent across the UK.

The Health and Social Care Select Committee recently reported the number of full-time equivalent GPs fell by more than 700 over three years to March 2022 – despite a pledge to deliver 6,000 more. Fiona Hazell, chief executive of Leukaemia UK said: “The earlier that people are diagnosed, the greater the range of treatment options available to them.

“By enabling patients to have access to the best range of treatments as early as possible, early diagnosis combined with advancements in treatments thanks to research, can help to save and improve lives. A leukaemia diagnosis has a devastating impact at any stage, but by detecting it early via a blood test, the additional anxiety, complications, and potential loss of life caused by an emergency diagnosis can be avoided.

“It is vitally important that the capacity for blood testing and pathology is increased to enable GPs to offer a blood test at the earliest opportunity and that there is more support for GPs to interpret the blood test results too.”

By

Jamie LopezSenior Reporter
  • 17:49, 5 SEP 2022

1 Comment on "Preston gran ‘knew something was wrong’ before waiting 18 months for devastating diagnosis"

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