Interview: Plight of the teenagers who face a deadly delay when cancer strikes

A new survey has found that a quarter of teenage cancer patients had to visit their GP four times before being referred to a specialist. Catherine Scott reports.

TABITHA Hazledine was diagnosed with a cold, asthma, low blood pressure and was even told she had “Freshers’ flu” – in fact she had cancer.

Over a four-month period, 20-year-old Tabitha went from doctor to doctor with her symptoms but was never referred for an X-ray or even to see a specialist.

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When eventually a friend who was a nurse told her she should go to A&E and ask for a chest X-ray, they discovered she was suffering Non-Hodgkin’s Lymphoma and had a tumour in her chest.

“It was an aggressive fast-growing tumour which by the time they found it was 13cms long,” says Tabitha who has just turned 24.

“If it had not been for my friend who was a nurse, I would never have had the chest X-ray and I don’t think I would be here today. All the doctors I saw never even thought about cancer or referring me for an X-ray.”

Tabitha is not alone. A Teenage Cancer Trust survey published last week revealed that one in four (24 per cent) teenage cancer patients had to visit their GP at least four times before their symptoms were taken seriously and they were referred to a specialist. 

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Of the young people surveyed, two-thirds (61 per cent ) felt their diagnosis could have been made quicker.

The survey, carried out at Teenage Cancer Trust’s annual “Find Your Sense of Tumour” conference also found that a fifth (21 per cent) of young patients reported that their GPs did not refer them to a specialist at all, despite almost two-thirds (59 per cent) presenting with at least two of the most common cancer symptoms: pain, lump/swelling, tiredness, headache or drastic weight loss.

Tabitha, who works for the Red Cross in Leeds, started to feel unwell in August 2007.

“I developed a cough and I thought I just had a cold or something and didn’t think that much about it. I started to lose a fair bit of weight and then started to feel like I was going to faint and was really tired all the time. I went to the GP who said I had low blood pressure.”

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The symptoms continued and when Tabitha went back to the University of Huddersfield that September she registered with the university doctor.

“I still wasn’t feeling right and so I went to see the doctor. He said I had ‘Freshers’ flu’ and sent me away.”

Tabitha visited the doctors three or four times over the next month. Her cough was persisting, she was losing more weight and felt exhausted all the time.

“In October, they decided I might have asthma and gave me an inhaler. None of the doctors had even listened to my chest, no one took a blood test.” The inhaler relieved some of Tabitha’s symptoms but she still felt unwell. Her life was busy with her studies and a part-time job.

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It was then her friend said she should go the Accident and Emergency department at the hospital as she thought Tabitha was suffering from a severe chest infection.

The X-ray revealed Tabitha had lots of fluid in one of her lungs although the pain was on her other side.

She was kept in hospital for a week while they drained her lungs but a CT scan showed the fluid was just returning and there was also fluid around her heart and she needed an operation on a hole in her lung. The scan also revealed a large mass in her chest. Tabitha was transferred to St James’s Hospital in Leeds

“Alarm bells started to ring in my head but no one actually said the word cancer. Then I was being seen by a consultant who had a group of student doctors with her. They went in the nurses’ station to look at the results of my tests. I saw the look on one of the student’s faces and I realised that something was very wrong.”

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Tabitha was suffering from non-Hodgkin’s Lymphoma (NHL), which is cancer of the lymphatic system. Around 10,900 cases of NHL are diagnosed in the UK every year and is the fifth most common cancer in adults.

“For two days, I had no idea how bad it was or even if they could treat it. I decided that if it was really bad I wasn’t going to have treatment, I was going to travel. It gave me something to focus on.”

But Tabitha’s cancer was treatable but due to the aggressive nature of the disease she had to undergo equally aggressive treatment. On the positive side, a painful test of her bone marrow revealed the cancer had not spread.

Chemotherapy started the day after Boxing Day and continued for 24 weeks on a three-week cycle. “I lost all my hair and was sick every time I had it. I had to take a break from university as it was my final year.”

She then had 15 days of radiotherapy.

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All the time she was treated in the Teenage Cancer Trust Unit at St James’s.

“It really helped to be in a unit with young people who all had similar issues which we could talk to each other about.”

In November 2008, Tabitha was given the all-clear, although she does have to go back for six-monthly checkups.

“It never really goes away,” she explains. “Every time you get a cough or cold you start to worry. And as the check-up date approaches it gets quite stressful.”

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Tabitha did return to university and gained her degree in public relations, although she believes her grade was affected by her illness and treatment.

She is frustrated by the attitude of the doctors who never thought about cancer as a possibility because of her age.

The Teenage Cancer Trust says Tabitha’s story is an example of a wider problem.

It says the findings of its survey highlight the serious issue of delayed diagnosis of cancer in 13- to 24-year-olds, suggesting health professionals are not considering cancer as a reality for young people.

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It is calling for the diagnosis rates of cancer in young people to be improved in order to transform the experience and outcomes for young people with cancer.

Simon Davies, CEO of Teenage Cancer Trust, said, “We know that young people can ignore their symptoms or be too scared to speak to their doctor immediately so it’s vital that when they do, GPs listen to them and take appropriate action.

“We advocate for a ‘three strikes’ approach where GPs automatically refer undiagnosed cases of young people presenting with the same symptoms after three repeat visits. 

“The two-week referral for suspected cancer is a major breakthrough for cancer patients but it won’t benefit young people until GPs think cancer quicker.”

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