We would like to hear the experiences of younger people with bowel cancer
Our Never Too Young campaign aims to lead the change for younger people with bowel cancer. We’re giving patients a voice and changing clinical policy and practice to stop people dying of bowel cancer under 50. As part of the campaign, we’ve launched a new survey that aims to capture younger bowel cancer patients’ experiences of diagnosis, treatment, care and support. This will help inform our future work in this area.
If you were under the age of 50 at the time of your diagnosis, help us reflect your experiences by completing our survey.
We last surveyed younger patients about their experiences in 2015, when they told us about the delays in diagnosis, poor access to genetic testing and the lack of awareness of symptoms that are affecting outcomes for under 50s with the disease. Based on the findings, together we’ve:
- Helped change GP referral guidelines to include younger people
- Co-published a risk assessment tool to help GPs identify bowel cancer
- Influenced the introduction of guidelines recommending all bowel cancer patients be tested for Lynch syndrome – a genetic condition that increases the risk of developing bowel cancer younger.
- Published a guide for younger people with bowel cancer.
We now want to see how people’s experiences have changed as a result and to determine what still needs to be done to improve the diagnosis, treatment, care and support of younger people with the disease.
We often hear from younger people who have had problems getting a diagnosis and who find it hard to get information and support that is relevant to them. Here are three very different stories from supporters.
Kate was 36 when she was referred for an urgent colonoscopy following a blood test that revealed she had anaemia. Rather than being seen within the two week window for urgent referrals, she was offered an appointment that was six months away. After her GP intervened, Kate was able to have her endoscopy earlier but still waited far longer than the two week target. She was subsequently diagnosed with stage two bowel cancer.
“I was seen for a colonoscopy which was in March 2018 and they discovered a tumour in my colon along with multiple polyps. The tumour had been bleeding internally and had been contributing to my anaemia. I hadn’t had any obvious bowel cancer symptoms, so it came as a big shock.”
Anisha was diagnosed with bowel cancer at the age of 39. Although she is a GP, and her husband is a consultant gastroenterologist, she assumed her symptoms were piles and irritable bowel syndrome (IBS) as she had no risk factors and was so young. She also had piles since childbirth. As a result Anisha did not seek help for her symptoms for around a year as she was so well otherwise. When she did speak to her GP, although it seemed unlikely, she was referred quickly and diagnosed with stage three bowel cancer.
“Being a GP, one could say I should have known better. But I felt surely my symptoms could have been attributable to piles and IBS. I’m very fit and healthy, with no risk factors and no family history of any cancer. I didn’t feel unwell but looking back, I probably had what I thought were new-onset IBS symptoms for the year before my diagnosis.”
Chris had to see his GP four times with abdominal pain before he was finally referred for a colonoscopy. By the time he was diagnosed, his cancer was stage four and had spread to his liver and peritoneum. Chris was told that his life expectancy was just two or three years. Over five years later, he’s still here, living with cancer and receiving regular chemotherapy.
“I was devastated to be told I was incurable and my life expectancy was just two or three years. Nearly four years later, I still have cancer but I try to live life the way I want to.”
Tell us your story
We want to hear from as many younger people with bowel cancer as possible. This will help to inform our work to improve diagnosis, treatment and care of people under 50. Patient experiences are at the heart of our Never Too Young campaign and our new survey will help us make sure that we’re focusing on the right issues and reflecting current experiences.
If you were under the age of 50 at your diagnosis, this is your chance to shape our campaign. Take the survey
- Read our guide on ‘Younger people with bowel cancer: a guide for the under 50s'
- Make your voice heard this General Election to help the millions of people affected by bowel cancer in the UK, including younger patients.
- Read the stories of younger patients diagnosed with bowel cancer.
- Find out more about our work to improve the diagnosis and care of people with Lynch syndrome