Updated guidance for people who have an increased risk of bowel cancer
In November, the British Society of Gastroenterology (BSG) co-published updated guidelines for the management of hereditary bowel cancer alongside the Association of Coloproctology of Great Britain and Ireland (ACPGBI) and the United Kingdom Cancer Genetics Group (UKCGG). The guidelines will cover the need and frequency of surveillance or ‘check-up’ colonoscopies and care for people who have genetic (hereditary) factors which may increase their lifetime risk of developing bowel cancer. This includes those with a family history of the disease or those with genetic conditions, such as Lynch syndrome, who have an increased risk.
A colonoscopy test uses a thin flexible tube with a tiny camera on the end to look inside your bowel. The main purpose of surveillance or ‘check-up’ colonoscopies is to find and remove polyps (pre-cancerous growths) so that they are prevented from potentially developing into cancer in the future. If a cancer does occur, surveillance may also find this cancer at an earlier stage when it is easier to treat and even cure.
Surveillance recommendations for people at increased risk
Under these guidelines, surveillance colonoscopies are recommended for people who have an increased risk of developing bowel cancer because of either their family history of the disease or genetic conditions they’ve inherited.
In terms of family history, the level of surveillance is categorised as:
- Average risk based on family history of bowel cancer: This is when the person under assessment has no family history, or has family history which does not fulfil moderate or high-risk. For individuals with average risk, it is recommended that they participate in bowel cancer screening when they are within the eligible screening age range (i.e. 60 to 75 year olds in England, Wales and Northern Ireland; 50 to 75 year olds in Scotland). Find out more about screening here.
- Moderate risk based on family history of bowel cancer: This is when a person has one first-degree relative (FDR, e.g. a parent, full sibling or child) diagnosed under the age of 50; or two FDRs diagnosed with the disease at any age (e.g. the person’s mother and their full sibling), or one FDR as well as one of their FDRs diagnosed at any age (e.g. the person’s mother and maternal grandmother). For those with moderate risk, it is recommended that they have a colonoscopy every five years if they are between the ages of 55 to 75 years old.
- High risk: This includes families with a cluster of at least three affected FDRs with bowel cancer diagnosed at any age, across at least two generations, of whom the individual is an FDR of at least one affected individual (e.g. the person’s mother, mother’s sibling and maternal grandmother). It is recommended that those with high risk family history have a colonoscopy every five years starting from the age of 40 to 75 years old.
People with Lynch syndrome:
The guideline also outlines surveillance recommendations for people with Lynch syndrome, a genetic condition that increases the lifetime risk of bowel cancer to up to 80%. The level of risk has been categorised by the type of Lynch syndrome a person has (i.e. MLH1, MSH2, MSH6 or PMS2). The recommendations for the gene variants are:
- MLH1 and MSH2: it is recommended that these patients have a colonoscopy every two years from the age of 25 to 75 years old.
- MSH6 and PMS2: it is recommended that these patients have a colonoscopy every two years from the age of 35 to 75 years old.
People diagnosed with bowel cancer under the age of 50:
The guideline recommends that people diagnosed with bowel cancer under the age of 50, who don’t have Lynch syndrome, to have a ‘check-up’ colonoscopy one year after their diagnosis. If nothing is found, the next colonoscopy will be two years later and then every five years until they reach the screening age within their respective UK nation.
Why have the guidelines been updated?
The updated guidelines take into account the latest evidence to improve upon the previous guidelines published ten years ago. Since then, new genetic tests have been made available to help healthcare professionals make decisions on preventing bowel cancer. Furthermore, this also takes into account the introduction of national bowel cancer screening programmes across the UK, whereby men and women of the eligible population are sent a home test kit every two years which look for hidden blood in poo with the aim to detect bowel cancer at an early stage.
The updated guidelines also give recommendations about medications, lifestyle advice, surgery and gene testing. It aims to make ‘check-ups’ more personalised for people who have an increased risk of bowel cancer. This will also reduce unnecessary investigations for those who won’t benefit from them, and better access to better care including specialist care and genetic investigations.
Will these guidelines impact my surveillance?
These guidelines are being applied retrospectively, therefore for some people this means that their already planned ‘check-up’ colonoscopies will change. If you have any worries or concerns about these changes, please speak to your GP or medical team.
- Find out more about our work to improve the diagnosis and care of people with Lynch syndrome.
- Find out more about the risk factors of bowel cancer and read about how you can reduce your risk of the disease.
- Become a campaign supporter and help us save more lives from people affected by bowel cancer.