When Ebony Lough began losing weight shortly after starting A-levels, they put it down to typical fluctuations a teenager may experience – but then their health rapidly worsened.
“I would always have dizzying headaches, chest pains, wouldn’t be able to keep any food down,” the now 20-year-old told The i Paper. “It quickly got to the stage I couldn’t keep any water down.
“I was off from school frequently and would have to go home early on days I felt ok to go in. Then I just couldn’t go in at all.”
Visits to the GP resulted in multiple blood tests which left the local doctor none the wiser. Ebony, from Hexham, went to A&E following a bout of nausea but was turned away after a few hours as a medic dismissed their symptoms as a sign of anorexia, referring them to a dietician.
“The letter claimed I was refusing to go to school, which wasn’t the case,” Ebony said.
Only after a further visit to an in-hospital GP did someone finally realise the urgency of the situation and send Ebony to another A&E with a note saying they should be tested for cancer immediately. A CT scan revealed tumours that were crushing Ebony’s windpipe which is why they were struggling to eat.
Biopsy results three days following Ebony’s admission in November 2022 confirmed they had non-Hodgkin’s Lymphoma, a group of blood cancers whose symptoms include enlarged lymph nodes, fever, night sweats, weight loss, and tiredness.
Surgery was not an option due to Ebony’s lungs being full of fluid. They were immediately put on steroids and sent to different hospitals for the next seven weeks. No cancer ward beds were available in one hospital – and Ebony ended up in an adult ICU [intensive care] ward at one stage as a six-month, six-round course of chemotherapy began. By the end of the course, Ebony’s tumour had shrunk and they returned to school to complete their A-levels.
The Teenage Cancer Trust, which Ebony credits with helping support them through their journey to recovery, said it was important to speak out about the problems with getting timely cancer diagnoses in younger people with the Government due to publish its National Cancer Plan for later this year.
Alarm bells failed to ring among GPs Ebony initially saw despite sudden and sustained weight loss over a short period.The latest NHS Cancer Patient Experience Survey shows that nearly half of teenagers and young adults diagnosed have to see their GP three or more times before referral – the most out of any age group. This is despite the fact cancer kills more young people than any other disease in the UK.
At least 37,000 young people aged between 15 and 24 will be diagnosed with cancer in the next 15 years, according to recent analysis from the One Cancer Voice coalition of the UK’s leading cancer charities. Delays in diagnosis also have a direct impact on mental health.
The 5 main symptoms of cancer in young people
Teenage Cancer Trust research has found that less than half of 18-to-24-year-olds can identify any of the five main warning signs of cancer in young people, which are:
1. Lumps and swellings
2. Unexplained tiredness
3. Persistent pain
4. Mole changes
5. Unexplained weight change
Recent research found that young people who wait two months or more for a diagnosis were also more likely to have clinical depression and those with multiple GP consultations before diagnosis were more likely to be clinically anxious.
Amy Harding, Director of Services, at Teenage Cancer Trust, which supports those age 13-24, said: “For the age group Teenage Cancer Trust support there is a need for the National Cancer Plan for England to take actions to speed up diagnosis. This could be done by providing training to health professionals across the broad range of primary care – GPs but also A&E staff and others – on how to spot the signs of cancer in teenagers and young people.
“We are also calling for a public health campaign to raise awareness of the most common symptoms of cancer amongst this age group which could encourage them to seek help sooner.”
Ebony advises anyone going through a similar experience to do everything they can to ensure they are listened to by medics from an early stage.A spokesman for the Department for Health and Social Care said: “This government is committed to improving the entire cancer journey for patients, from diagnosis all the way through to living with – and beyond – cancer, as we deliver our 10 Year Health Plan. We are already seeing progress, with 160,000 more patients having cancer diagnosed or ruled out on time since July 2024.
“We know there is more to be done to improve outcomes and experience of care for children, teenagers and young adults with cancer. That’s why we have launched the Children and Young People Cancer Taskforce, as well as the life-saving patient safety initiative Jess’s Rule supporting GPs to catch serious conditions earlier.”
Jess’s Rule is named in memory of Jessica Brady, who died of cancer in December 2020 at the age of 27, and will help avoid tragic, preventable deaths as GPs are supported to catch potentially deadly illnesses sooner.
In the five months leading up to her death, Jessica had more than 20 appointments with her GP practice but eventually had to seek private healthcare. She was later diagnosed with stage 4 adenocarcinoma. With such an advanced disease there was no available treatment. She was admitted into hospital where she died 3 weeks later.
The spokesman also said the Taskforce “will identify tangible ways to improve detection and diagnosis, and ensure the needs of young cancer patients are reflected in the forthcoming National Cancer Plan”.
Ebony, who is now studying zoology at Newcastle University with a final check-up to come in February, said: “If the Teenage Cancer Trust hadn’t been there I probably would have been trapped in my own mind. I’d have felt very alone, probably. My mum was there the whole time of course but everyone in the trust helped make me smile again.”
In retrospect, Ebony feels there was not a sense of urgency among medics there should have been. Asked what advice they have for someone else going through a similar journey, Ebony said: “Always make sure you are listened to by the doctors because not all of them may think it’s really serious when it really could be. The symptoms might seem so broad, but I never knew weight loss could be a symptom [of cancer].
“I thought I was just a teenager and it was a dietary thing, but it wasn’t. If you notice anything wrong get it checked – and make sure you’re listened to.”
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