A new Never Too Young project group has launched to support younger people with bowel cancer. The team – many who are living with bowel cancer themselves, or who have been directly affected by it – will share their experiences and give a unique voice to others with the disease. They will also work with us to challenge policy and campaign for changes to clinical practice.
The group was set up by Sophia Sangchi, who sadly died a year ago today, November 25, at only 33. Sophia, a chartered surveyor, was diagnosed with bowel cancer at the age of 31. She had bowel cancer symptoms for a number of years, but was told she was too young to have the disease. By the time it was confirmed, the cancer had spread.
Sophia’s brother Ben says: "Following her diagnosis, Sophia committed herself to support other young people living with this disease. The existing services, she noticed, were largely aimed at those over 50 and Sophia wanted to see change. With this, she reached out to some of her fellow young bowel cancer sufferers to create a specific 'patient-led' campaign "Never Too Young" directly associated with Bowel Cancer UK.
"Her aim was to increase awareness of under-50s both within the medical community and amongst those young people for whom timely diagnosis and appropriate treatment could be lifesaving. Throughout her treatment, she worked tirelessly, driven by a steely determination to get this project up and running. She wanted to encourage people to 'listen to their bodies', catch it early and make sure the right support is available when needed."
Cara Hoofe, from the group, says: "We’re a team of mostly younger bowel cancer patients, who want to connect people together. Our unique, patient-led support is designed to give young people with the disease a voice – we’re educating, inspiring, authentic and unafraid to take on difficult or taboo subjects.
"We’ve been invisible for too long. It's time to bring our voices together and amplify our message so it can be heard by those with the power to deliver real change. Add your voice to ours. Let’s save lives together."
Our Chief Executive Genevieve Edwards said: "We’re thrilled to be joined by the Never Too Young project group on the next step of our campaign’s journey. We launched Never Too Young in 2013, and since then, have raised important awareness about bowel cancer in under 50s. We’ve campaigned for identification of those at high risk of developing bowel cancer, and influenced policy changes to improve the early diagnosis, treatment and care of younger people with the disease.
"Now, this group of amazing young people with direct experience of a bowel cancer diagnosis, will extend the reach of our campaign further, providing unique support to others dealing with the disease. More than 2,500 under 50s are diagnosed with bowel cancer in the UK each year – often at a later stage, when it’s more difficult to treat – and they can face very different attitudes, issues and challenges to older people. I have no doubt that they will make a difference for many, providing incredible support to younger patients and connecting them with others."
We published our Never Too Young
report earlier this year. It found that younger people with symptoms of bowel cancer are delaying visiting their GP for months because they are unaware under 50s can develop the disease. It also highlighted that:
- half of respondents were not aware they could develop the disease at a younger age prior to diagnosis
- around a third (30%) had delayed visiting their GP for at least three months, even though they had symptoms of bowel cancer
- more than four in ten (43%) were forced to visit their doctor three times or more, with one in six (16%) returning on at least five occasions, before being referred for bowel cancer tests
- four in ten (40%) 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%) weren’t aware of any symptoms of bowel cancer before their diagnosis, with more than four in ten (42%) 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.
Low public awareness of the symptoms is not the only factor causing delays. Once a patient goes to their GP, they are often not referred on for further investigation, despite having obvious bowel cancer symptoms. Two thirds of younger patients (65%) 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%) were told they were too young.