Beating bowel cancer together

New survey shows younger bowel cancer patients struggling for diagnosis and support

Bowel Cancer UK has published the results of a major survey of people diagnosed with bowel cancer under the age of 50.

The results highlight an alarming lack of awareness of bowel cancer as a condition that can affect younger people and delays in diagnosis resulting from a failure to act on symptoms.

The Never Too Young survey captures the experiences and opinions of over 400 bowel cancer patients under 50.  Bowel cancer is the UK's second biggest cancer killer. There are around 2,100 people under the age of 50 diagnosed with bowel cancer every year in the UK. While this is only five per cent of people diagnosed with the disease, there has been a 25 per cent increase in the number of under 50s diagnosed in the past 10 years. Nationally, three out of five people diagnosed under the age of 50 will be diagnosed in the later stages of the disease.

The survey showed that only one in five younger bowel cancer patients knew that they could be at risk of developing bowel cancer at their age prior to diagnosis. Over half (57 per cent) of people in the survey were not aware of the symptoms of bowel cancer prior to being diagnosed. Even where they were aware of symptoms, more than a quarter (27 per cent) of younger people put off seeing their GP for more than three months after developing symptoms.

Once at the GP, there were variations in how younger people were treated. One in four people said that they felt ignored by their GP. 37 per cent of women and 15 per cent of men went to the GP five or more times or were diagnosed as an emergency before the GP referred them for testing for bowel cancer. Overall, one in five took over a year to be diagnosed after first seeing their GP.

However, the survey shows that if the GP does act quickly, people can be diagnosed earlier. One in five younger patients asked their GP if they thought it could be bowel cancer. Of those, two thirds of people diagnosed with later stage disease said the GP dismissed the idea because they thought the person was too young, compared to 11 per cent of people diagnosed at Stage 1.

Once diagnosed, half were not offered genetic testing for them and their families. This is concerning as there are several genetic conditions (such as Lynch syndrome) that significantly increase the risk of bowel cancer in younger people.

One in two people said that they did not get enough information on what to expect from treatment and potential side-effects. For example, half of the people who needed advice on how treatment would affect their fertility did not get it.

Deborah Alsina, Chief Executive of Bowel Cancer UK, said, "Our survey highlights that younger people with bowel cancer experience significant delays in diagnosis. This is in part because they do not think bowel cancer is a possibility, and in part because neither do their clinicians, but it could be. Two thousand one hundred people under 50 are diagnosed with bowel cancer every year in the UK, and this number has risen nearly 25 per cent in the past 10 years. Unless action is taken to address this lack of awareness, people will continue to be diagnosed late and therefore die needlessly. Bowel cancer is treatable, but early diagnosis is key.

"Since our campaign launched two years ago, we have made progress.  However this survey clearly shows that significant variations in treatment and care remain.  For example, we must see faster progress on the delivery of genetic testing for all under 50s diagnosed with bowel cancer and surveillance screening improved for people at higher risk.  There needs to be a greater investment in research to improve our understanding of why incidence is increasing in this group and what more we can do to identify people at risk at the earliest possible opportunity."

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