‘I asked if it was bowel cancer and was told not to be so silly’

Delays in seeking medical advice, coupled with GPs failing to refer younger people – those under the age of 50 - with classic bowel cancer symptoms for tests, are leading to more in this age group being diagnosed with the disease at an advanced stage, when it’s more difficult to treat successfully.

Bowel Cancer UK’s new Never Too Young report highlights the fact that younger people can also be diagnosed with bowel cancer, and that it isn’t something which affects only older people.

A survey by the charity of 1,073 people in the UK who had been diagnosed with bowel cancer under the age of 50, and a further 222 who responded on behalf of someone who had received a diagnosis below this age, found:  half (50 per cent) were not aware they could develop the disease at a younger age prior to diagnosis;  around a third (30 per cent) had delayed visiting their GP for at least three months, even though they had symptoms of bowel cancer;  more than four in ten (43 per cent) were forced to visit their doctor three times or more, with one in six (16 per cent) returning on at least five occasions before being referred for bowel cancer tests; and  four in ten (40 per cent) were not satisfied with the amount of support and information about fertility and family planning given by healthcare professionals. 

The report also revealed a third of those surveyed (32 per cent) weren’t aware of any symptoms of bowel cancer before their diagnosis, with more than four in ten (42 per cent) knowing only a few. This lack of awareness of bowel cancer symptoms was found to be a key cause of delay in people visiting their doctor. 

But low public awareness of the symptoms is not the only factor causing delays. Once a patient does go to their GP, they are often not referred on for further investigation, despite having classic ‘red flag’ symptoms. Two thirds of younger patients (65 per cent) were initially diagnosed with another condition, such as irritable bowel syndrome, haemorrhoids/piles and anaemia.  

GPs are likely to see very few patients who go on to be diagnosed with bowel cancer under the age of 50. The survey shows that of the patients who asked if their symptoms could lead to a bowel cancer diagnosis, four in ten (42 per cent) were told they were too young.  

More than 42,000 people are diagnosed with bowel cancer in the UK each year, with 2,500 (six per cent) of these under the age of 50. While the disease is much rarer in younger people, the number of under 50s receiving a diagnosis each year is similar to the total number of cervical cancer and testicular cancer diagnoses for all ages in the same period.

The Never Too Young report urges younger people to familiarise themselves with the symptoms of bowel cancer – including bleeding from your bottom and/or blood in your poo, a persistent and unexplained change in bowel habit, unexplained weight loss, extreme tiredness for no obvious reason, and a pain or lump in your tummy - to ensure the best possible chance of an early diagnosis. 

Bowel cancer is staged numerically. The four main stages are: stage one – the cancer is still contained within the lining of the bowel or rectum; stage two - the cancer has spread beyond the layer of muscle surrounding the bowel and may have entered the surface covering the bowel or nearby organs; stage three– the cancer has spread into nearby lymph nodes; and stage four - where the cancer has spread beyond the bowel into another part of the body, such as the liver

Bowel Cancer UK is calling on healthcare professionals to refer people under 50 presenting with significant symptoms without unnecessary delay and to provide tailored support to suit their needs following a diagnosis. 

Katharine Mcauley, from Co Down, was diagnosed with stage four bowel cancer at the age of 36. She saw her GP regularly for more than two years with bowel problems, and was repeatedly told she had irritable bowel syndrome (IBS).

Katharine says: “It was incredibly painful when I went to the loo, and at times I passed out on the toilet in pain - I couldn’t believe it was IBS. I eventually had a flexi-sigmoidoscopy procedure, which looked at part of my bowel. I asked the consultant if it could be cancer, but was told: ‘don’t be silly little girl’, which made me feel awful. I later found out they’d missed my tumour by an inch.

“The next step was to look inside my stomach, but they couldn’t do that while I was pregnant with my third child. Then, miraculously, all my symptoms went away, and life went back to normal.

“But after my daughter was born, they came back with a vengeance. I was passing out on the toilet, developed an abscess and had flu-like symptoms. I went to the GP, who told me to go straight to A&E. While at hospital, I developed sepsis.

“I was booked in for a CT scan and an hour later I was told I had cancer. I had surgery, which confirmed stage four bowel cancer, as they had found spots in my liver, it was everywhere.

“I was in surgery for seven hours to remove the tumour in my bowel, and seven out of 23 lymph nodes were found to be cancerous, as well as four tumours in my liver. I had seven rounds of chemotherapy, and responded amazingly, with the tumours shrinking and one completely gone. In January 2020 I had liver surgery to remove 70 per cent of my liver.

“I had more chemotherapy earlier this year, which involved taking 16 tablets a day, and had a scan at the end of June, which showed no evidence of the disease. But I still worry every single day, I struggle mentally and the cancer has changed my whole life.

“My oncologist said the tumour was probably there for two years. It’s incredibly frustrating as I was going to my GP for two-and-a-half years before I got pregnant, but kept being dismissed.”

Katharine is not alone – one respondent went to their GP with symptoms 18 times, begging for a scan. By the time she was diagnosed, she had developed stage four bowel cancer.  

Genevieve Edwards, chief executive at Bowel Cancer UK, says: “The Never Too Young report makes for devastating reading. It’s vital that people can recognise the signs of bowel cancer and know it isn’t a disease which only affects older people. Many are delaying getting help for their symptoms at the earliest opportunity, assuming they’re not serious or they will just go away on their own. 

“It’s also incredibly concerning that doctors continue to rule out the disease for people who visit with classic red flag symptoms, telling them they’re too young to have bowel cancer. Nobody should be told they don’t have bowel cancer based only on their age and referrals for further investigation should be made as soon as possible. Bowel cancer is the second biggest cancer killer in the UK, but it’s treatable and curable, especially when diagnosed early.

“Bowel Cancer UK’s symptoms diary helps patients to keep track of possible signs of bowel cancer to share with their GP. We’d like all doctors to signpost the diary, which we believe will make a big difference to getting a faster diagnosis.”

The Never Too Young survey results were captured at a time of ‘business as usual’ for the healthcare system, and show that improvements achieved to date are still not enough. Sadly, people with bowel cancer have been severely affected by the Covid-19 crisis, unable to access lifesaving treatment and surgeries during this time, with cancer screening also paused for months. Consequently, the pandemic has served to amplify the existing issues experienced by younger people. 

The NHS Long Term Plan sets an ambition that three out of four cancers will be detected at an early stage by 2028. Bowel Cancer UK wants everyone to be able to recognise the symptoms and act on them by visiting their GP as soon as possible. Visit bowelcanceruk.org.uk