Early detection of bowel cancer is linked to significantly higher survival rates. Although barriers to early diagnosis exist across all cancers, one that poses a major obstacle in bowel cancer is stigma. To learn more about why this is and how we can overcome it, Isy Godfrey spoke with Dr Penelope (Pebs) Edwards and Dr Jennifer Fisher, both clinical fellows in the Genomics and Evolutionary Dynamics laboratory at The Institute of Cancer Research, London.
Early diagnosis is one of the most powerful tools we have in the fight against bowel cancer. When the disease is at its earliest stages, treatment is often more effective and less intensive, offering people the best possible chance of survival.
However, many cases are diagnosed late in people who are outside routine screening because they are younger than 50 or have an undiagnosed inherited cancer risk.
The importance of earlier diagnosis is becoming even clearer as rates of bowel cancer rise among younger adults. Recently, a major global study led by The Institute of Cancer Research (ICR) challenged the idea of a broad ‘epidemic’ of early‑onset cancer, revealing that bowel cancer stands apart.
Unlike most other cancers, bowel cancer has an incidence rate that is increasing faster in people below the age of 50 than in older adults in many countries. This highlights the urgent need to understand why bowel cancer seems to be appearing earlier in life and to ensure that symptoms are recognised and acted on quickly, regardless of age.
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Stigma can create an additional obstacle
At the ICR, our scientists are working to improve diagnosis by uncovering exactly how bowel cancer develops and how it can be identified sooner.
However, scientific knowledge is not the only hurdle to be overcome. In bowel cancer, social factors can also be responsible for delaying diagnosis.
Although bowel habits are a universal fact of life, when something changes and unexplained symptoms appear – such as persistent pain, bleeding or altered bowel movements – many people hesitate to speak up. Stigma, embarrassment, fear and misunderstanding continue to surround diseases affecting the bowel, and this may result not only in a later diagnosis but also in prolonged anxiety and physical discomfort for the individual.
Despite growing awareness campaigns and improvements in screening, talking about things like constipation, diarrhoea, incontinence and bloating can feel deeply uncomfortable, or even impolite, for many people – even in the presence of healthcare professionals. Understanding why, and how we can change this, is essential if we are to improve outcomes and save lives.
Dr Jennifer Fisher speaks with patients regularly as part of her clinical role as a gastroenterology registrar at St Mark’s Academic Institute, so she has seen first-hand how challenging it can be for people to talk about their bowel symptoms. She says: “Although stigma has eased somewhat in specialist settings, such as inflammatory bowel disease (IBD) clinics, this is not the case for everyone. Awareness of bowel cancer symptoms is still relatively low in the general population, and there can be stigma around discussing bowel habits.”
Dr Fisher notes that embarrassment can lead to “variation in symptom reporting”, whereby people normalise significant changes or put off raising concerns. They may delay appointments, downplay symptoms or avoid follow‑up discussions until their symptoms become impossible to ignore. At this point, the disease may be more difficult to treat.
Opening the door to earlier diagnosis through research
One crucial area of progress involves improving the detection of inherited cancer risk. Research led by the ICR has shown that many people with Lynch syndrome – a genetic condition that dramatically increases the risk of bowel cancer – are still being missed.
By improving access to genetic and tumour testing, particularly for people diagnosed with related cancers, researchers believe many bowel cancers could be prevented or found earlier through targeted surveillance. Identifying people with Lynch syndrome not only protects individuals but allows their relatives to be monitored, potentially keeping cancers at bay.
People who know that their genetic status places them at higher risk of developing bowel cancer may be less likely to dismiss early symptoms and feel less awkward about seeking healthcare.
Without this heightened awareness, it can be easy to overlook the warning signs of the disease. After all, one of the biggest challenges in diagnosing bowel cancer is that its symptoms often overlap with those of much more common conditions. Abdominal pain, bloating, diarrhoea, constipation and intermittent bleeding are frequently – and, in most cases, correctly – attributed to irritable bowel syndrome (IBS), food intolerances, haemorrhoids, medication side effects or stress. This overlap can influence both patients’ and healthcare professionals’ perceptions, particularly when symptoms develop gradually or fluctuate over time.
Dr Fisher says: “Early bowel cancer symptoms can resemble benign conditions, making it harder to identify who needs urgent investigation. Age plays a significant role here too. There is still a widespread assumption that young people are unlikely to develop cancer, which may lower suspicion and delay investigation.
“While structured screening and referral pathways exist for people aged 50 and older, they do not exist in the same way for younger patients, making it easier for symptoms to be normalised or explained away.”
Missed opportunities for early detection
Research shows that screening saves lives. Yet participation rates show that embarrassment persists – even for tests completed at home. Providing a stool sample can feel uncomfortable, unpleasant or even shameful, despite the privacy involved.
For some people, this discomfort outweighs concerns about their health. The result is missed opportunities for early detection. Normalising these tests – and reframing them as routine, preventative healthcare – is a crucial step towards reducing stigma.
Fear is another powerful barrier, particularly when it comes to diagnostic procedures such as a colonoscopy. Many people worry about pain, loss of dignity or embarrassment. Others are afraid of what the test might find.
“Many people don’t know what a colonoscopy involves, and that uncertainty can be off‑putting,” says Dr Pebs Edwards, who has a background as a medical oncologist at The Royal Marsden NHS Trust Foundation. “However, the procedure is usually well-tolerated and provides very valuable information.”
Dr Fisher agrees: “Explaining that colonoscopy is a routine, safe procedure, usually performed with sedation, and that it provides the most accurate assessment can help reduce fear. It’s also helpful to emphasise that early investigation can either rule out cancer or detect it at a more treatable stage. Clear, honest information helps people make informed decisions rather than avoiding tests altogether.”
In the future, it is hoped that earlier treatment will also reduce the need for invasive treatment. This means finding new ways to identify high-risk individuals.
Recently, in groundbreaking work at the ICR, researchers identified a critical early ‘Big Bang’ moment in bowel cancer development, when tumours first escape the immune system. Understanding this early turning point – which determines how the cancer grows and responds to certain treatments – may open the door to new ways of detecting and treating the disease before it becomes resistant or advanced.
Dr Edwards said: “The rise in bowel cancer among younger adults is already prompting discussions about whether screening strategies need to change. However, lowering the screening age may not be the most effective use of resources, as most younger people are still at very low risk. What’s more important is improving our ability to identify who is at higher risk earlier, so we can target screening and investigations more precisely.”
Working towards prevention
In an ideal world, we would be able to reduce the need for potentially invasive treatments by preventing bowel cancer from developing in the first place.
Excitingly, this is not beyond the realm of possibility. Finding ways to prevent the disease, or at least stop it early in its tracks, is a key goal of our research in this field.
Some of our researchers are hoping to learn more about bowel cancer by looking to the past. By studying bowel tumour samples dating back to the 1950s, they are comparing cancers across generations to uncover how changes in diet, lifestyle and environmental exposures may be driving the rise in early‑onset disease. This research could reveal warning signs or molecular fingerprints that help doctors spot cancers earlier in younger people. It could also identify triggers of the disease that can be avoided through lifestyle choices, which could reduce people’s risk.
The weight of blame and judgement
It is important, though, to remember that there are multiple possible causes of bowel cancer, with the majority being outside of an individual’s control. With stigma can also come blame, and as media coverage increasingly links bowel cancer to diet and lifestyle, some people may fear being unfairly judged for their diagnosis.
Dr Fisher explains that feelings of guilt can arise when risks are oversimplified. “There is increasing media coverage around processed foods and bowel cancer risk,” she says, “and some patients may worry that they are being blamed.”
Dr Edwards agrees: “I think people can feel blamed or judged for many aspects of their health, and diet is often one of them. Focusing on a balanced diet, adequate fibre and moderation is sensible, but the reality is that cancer is complex, and not everything is within our control.”
Misunderstandings about life after treatment
Beyond diagnosis, stigma also surrounds bowel cancer treatment – particularly when it comes to colostomies and ileostomies, which are types of stomas. A stoma is a hole in the abdominal wall that is created surgically to divert faeces through the skin into a pouch worn on the body. Many people have limited understanding of what a stoma is, why one may be needed or what day‑to‑day life looks like afterwards.
The lack of open discussion around stomas can leave patients feeling isolated or unprepared. The fear of living with a stoma may even encourage some people to ignore gut-related symptoms for longer, even though the chance of this outcome is statistically very low, as Dr Fisher explains:
“There are many misconceptions, such as assuming that a stoma is always needed and that it will always be permanent.”
Another aspect of post-treatment life that is not widely known is that recovery doesn’t always mean a return to ‘normal’.
“I think there can be a lack of understanding about the potential impact of bowel cancer treatment,” says Dr Fisher. “Many people associate it primarily with surgery or chemotherapy and may not fully appreciate what living with a temporary or permanent stoma involves, or how recovery can affect bowel function, diet, fatigue and quality of life. Improving awareness through patient education, offering pre-treatment counselling and sharing real patient experiences can help set realistic expectations.”
Our scientists are working to develop smarter, kinder treatments that not only are more effective in destroying cancer cells but also produce fewer and less significant side effects.
For instance, one team has successfully used artificial intelligence (AI) to determine which patients with advanced bowel cancer are most likely to respond to a commonly used targeted drug. The tool, known as PhenMap, integrates complex data on the genetic make-up of the tumour with clinical information, such as gender, age and tumour position, to help guide treatment decisions.
If PhenMap can be further developed to predict responses to multiple other targeted therapies, it could save many patients from undergoing unnecessary treatments. It could also help ensure that each person is given the most effective treatment for their cancer right away, when the disease is likely to be easier to treat,
A future without silence
The evidence shows that bowel disease does not discriminate by age, background or lifestyle. Stigma, however, continues to affect who is diagnosed early and who is not.
Advances in bowel cancer research are bringing us closer to a future where bowel cancer is diagnosed earlier, treated more precisely and, ultimately, prevented altogether.
In the meantime, though, there is a need to shift the narrative by challenging embarrassment, increasing understanding and sharing real experiences. Many suggest that talking about bowel health should feel no more uncomfortable than talking about blood pressure, joint pain or a chest infection.
Dr Edwards says: “We need to normalise the conversation. Everyone has bowel habits, and changes in those habits can be an important signal that something isn’t right. Talking openly – in public health campaigns, schools, workplaces, GP surgeries and the media – helps remove taboo and encourages earlier action.
“Early diagnosis makes a significant difference, so if something doesn’t feel right, it’s always worth getting checked.”
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Image credit: Gerd Altmann from Pixabay (modified)