Understanding long-term and late effects of bowel cancer treatment – the research priorities

More people are living with and beyond bowel cancer. However, this means, more people living for longer with the side effects of their treatment – side effects that can last far beyond their active treatment. These people deserve support and understanding. So, we brought together a group of experts to decide the areas the wider research community needs to focus on. Here’s what we found... 

What are these long-term effects? 

These long-term and late effects cover a range of conditions, including: 

• Bowel dysfunction, increased urgency, incontinence, diarrhoea, constipation, bloating 

• Bladder dysfunction, increased urgency, incontinence 

• Chronic pain, fatigue, peripheral neuropathy, insomnia 

• Psychological problems, depression, anxiety, body image distress 

• Sexual dysfunction, pain, nerve damage, loss of function, reduced enjoyment 

All of these can greatly affect the daily life and wellbeing of people who have had treatment for bowel cancer. 4 in 5 bowel cancer survivors report one or more long-term conditions. 

Why is this important? 

Despite the scale of these issues, not enough is being done to support patients and offer ways of treating or managing their late effects. In particular, access to support and follow-up treatment varies greatly across the country. 

Many people struggle with these conditions alone, believing it’s a necessary cost of having survived cancer – but we don’t think it should be. Surviving bowel cancer should not mean having to accept a poorer quality of life. 

Many people tell us they continue to struggle with symptoms long-after treatment has ended. And some find it difficult to get the support they need. Others don't realise help may be available at all. 

As more people survive the disease, there’s an urgent need to better understand the long-term impact of treatment and identify the support and services that make the biggest difference. 

How do we understand these effects more?

In October 2025, we brought together a group of experts in the field – clinicians, researchers, allied health professionals, patient advocates and charity representatives – for a roundtable discussion. 

This meeting looked at what evidence we currently have on long-term and late effects for bowel cancer patients, and what gaps there are in our knowledge. From this, the members of the roundtable came up with a list of key research priorities. 

We believe these questions should be prioritised by the bowel cancer research community. This will help to fill the existing knowledge gaps, which will allow improved clinics and support services for patients after their bowel cancer treatment.  

What are the key areas to focus on? 

Priority 1: Do patients have better outcomes and fewer late effects if they go to specialist prehabilitation clinics before their treatment? 

Prehabilitation (prehab) aims to improve a patient’s physical and psychological state before starting treatment. This might include exercise, counselling and nutritional support. 

There’s evidence that patients who take part in prehab programmes have fewer post-operative complications. However, prehab is often skipped in favour of starting treatment as soon as possible. Stronger evidence for the benefits of prehab will help make the case for more prehab services. 

Priority 2: How will a better way to measure late effects improve how patients are supported? When in the cancer journey is it most effective to assess patient needs? 

There are lots of different tools and questionnaires that can be used to ask about the late effects someone might be experiencing. They all collect slightly different data and are used at different points in a patient’s cancer treatment and afterwards. 

A tool that collects good-quality data but without over-burdening patients will help to accurately measure the impact that late effects conditions have on patients. It’s also important when finding the best ways to treat these conditions. Understanding how and when to collect this data will be key to improve support, treatment and care for these patients.

Priority 3: Do patients have better outcomes when their late effects are assessed and treated? Is it economically viable to do this?

Treating late effects – such as through specialised late effects clinics – requires dedicated funding from the NHS budget. We need to strengthen the argument for these clinics. One way to do this is to show that they save money elsewhere. 

This might be by them improving a patient’s overall health and therefore reducing the need for other services. Or by reducing the impact on the nation’s economy as people are more able to work because late effects like fatigue, depression and severe bowel issues have been addressed.

Priority 4: How can we educate healthcare professionals on the consequences of bowel cancer treatment? How do we increase their skills in this area? 

Access to specialist services varies greatly across the county, with some patients able to go to specialist late effects clinics, while others have no dedicated support. 

There can also be a lot of variation in what healthcare professionals understand about cancer late effects, which means a patient may feel like they’ve hit a “dead-end” with getting help if their GP or oncology team don’t know how to address their ongoing issues. We need to work out how to help healthcare professionals understand these issues and so improve access to care across the county. 

Priority 5: What dietary advice is there for how to manage symptoms? What if someone has multiple different (possible conflicting) conditions?

Diet can be a key way to help manage bowel cancer late effects, but the advice for patients is often conflicting or incomplete. There’s often not any guidance about how to balance multiple nutritional needs, for example bile acid malabsorption with diabetes, or a stoma with cultural or religious diets. 

This can leave patients to try and figure things out on their own through a trial-and-error approach, which might not find a solution and could make things worse, or risk missing key nutrients from their diet. By doing further research in this area better guidance can be developed, improving patient quality of life. 

You can read the report in full, setting out the priorities in detail and making it clear why this matters by clicking below.

What next? 

We want to see more investment into long-term and late effects, but this needs to be done in a strategic way. We’ll use these findings to strongly encourage researchers, funders and policy makers to focus their work on these key priorities. 

If the research community can work together, it will help to answer the biggest questions around long-term and late effects. With these answers we’ll continue to campaign for the best treatment and care for everyone affected by bowel cancer. 

You can find out more about our work by following the links below. 

• Read our research strategy

• Explore our current research projects 

• Learn about our other campaigning work