Being diagnosed with cancer at 24 was something Cengi Sen had prepared himself for, after discovering he had swollen lymph nodes. But he wasn’t prepared for the “cancer ghosting” from his friends that followed.
“I did have a few very kind friends who reached out, who kept in frequent contact, but I lost 90 per cent of my friends to my cancer diagnosis,” he told The Independent.
“The pain of losing my friends was in equal difficulty to receiving treatment.”
The treatment itself was tough, not only from the physical impact of chemotherapy but also the emotional toll of having to rely on others for help.
“It’s the dependence that you have to have on others that can be difficult to stomach at times, and the lack of a choice that you have at times as well,” he said.
One in 10 cancer diagnoses in the UK involve people under 50, and cancer in 15- to 24-year-olds is rarer still, making up less than 1 per cent of annual diagnoses according to Cancer Research UK. But the rate of diagnoses among the young is on the rise and experts do not yet know exactly why.
While early-onset diagnoses remain thankfully less common than cancers in older people, the experience of those people getting diagnosed and treated can be difficult.
The government has urged experts and cancer survivors to share their experiences as it creates a new national cancer plan, and health secretary Wes Streeting said he wanted to “make Britain a world leader in saving lives from this deadly disease”.
Young people ‘cut off’
Sophie Epstone is the founder and chief executive of Trekstock, the cancer charity for young people that helped Mr Sen process his cancer ghosting experience. She said many young cancer patients often lose friends following diagnosis.
“Cancer ghosting, or the experience of friends and networks disappearing during a cancer diagnosis, is unfortunately not uncommon among our community,” she said.
Ms Epstone said people diagnosed with cancer in their twenties or thirties may be the first in their friend group to experience the disease, and maintaining friendships following diagnosis can be tricky.
“Cancer can be a scary and overwhelming topic for anyone, especially for young people who may lack the life experience or emotional tools to handle such a serious situation. Young people may feel uncomfortable, unsure of what to say or do, or even afraid of saying the wrong thing,” she said.
But young people struggle even before they’re diagnosed with cancer. Ms Epstone said people aged between 20 and 40 often report that their symptoms are dismissed by healthcare professionals.
“Time and time again, people are coming to us and saying, ‘I was told it might be this, I was told I was too young, I was told it doesn’t happen to you’,” she said.
Because the majority of cancer patients are older – on average, a third of all new cases are in people aged over 75, according to Cancer Research UK – Ms Epstone said cancer survivors can feel overlooked and have told her stories of going to the hospital with their mum only for healthcare workers to assume the appointment is for their parent.
According to Cancer Research UK, cancer rates in 25- to 49-year-olds increased by 24 per cent between 1995 and 2019.
Karis Betts, inequalities lead at Cancer Research UK, said while the overall proportion of cases in young people was small, it was not insignificant and was growing. She said the organisation was funding ongoing research to find out why this was the case.
“It’s likely things to do with preventable risk factors, so changes in risk factors like obesity, changes in genetics, but also the flip side of it is we have better diagnosis and detection than we used to. So we’re picking up cancers that we might not have done before,” she said.
“We don’t have a clear answer for why that is now, not yet.”
Greater medical awareness needed
Naman Julka-Anderson, an allied health professional and clinical adviser at Macmillan Cancer Support, said that generally, younger people tended to be more attuned to unusual changes that might require a trip to the doctor but GPs, who are extremely busy, may be less aware that younger people can get cancer.
“GPs see hundreds of different types of problems a day, so I’m not saying it’s their fault – there’s a lot to deal with. But sometimes things go wrong,” he said.
Professor Peter Johnson, national clinical director for cancer at NHS England, said that while it was rare for people aged under 50 to get cancer, the increase, particularly in bowel cancer, was concerning.
The NHS lowered the bowel cancer screening age from 60 to 50 in a bid to maximise the benefits of the programme, but he said it was difficult to make a national screening programme effective for something relatively uncommon.
“In the younger age groups, it’s often a matter of symptom awareness and of working with colleagues in primary care, who, of course, have many interactions with people who don’t have cancer, and a very small number with people who do, to make sure there’s a recognition that people under the age of 50 will sometimes get cancer,” Prof Johnson said.
