What to expect from the NHS Bowel Screening Programme for people with Lynch syndrome

Updated: Sep 7

If you live with Lynch syndrome, regular bowel screening is one of the most effective ways to reduce your risk of bowel (colorectal) cancer and catch problems early. The NHS Bowel Cancer Screening Programme has produced a clear, plain-English leaflet, Helping You Decide, to walk you through the offer and help you choose what’s right for you.

Below is a short summary of the key points, plus places to find support.

Who gets invited — and when

In England, people diagnosed with Lynch syndrome are offered a colonoscopy every two years through the national programme. Invitations usually start just after age 25 for those with MLH1, MSH2 or EPCAM variants, and just after age 35 for MSH6 or PMS2. If you’re 75 or over, you won’t be invited automatically, but you can still request screening every two years by calling 0800 707 60 60. If you think you’re due but haven’t had a letter, the helpline can check for you.

Why screening matters

For people with Lynch syndrome, regular colonoscopy reduces the chance of becoming seriously ill or dying from bowel cancer and lowers the chance of cancer developing in the first place. That’s because colonoscopy can remove polyps (small growths that can become cancer over time) and find cancers at an earlier, more treatable stage.

Benefits and risks in plain terms

The leaflet sets out the pros and cons to help you weigh things up:

Benefits: with regular colonoscopies, the chance of dying from bowel cancer is more than halved, and (across a lifetime) between 40 and 60 out of 100 people with Lynch may avoid bowel cancer altogether thanks to screening. Polyps found during the test can often be removed there and then.
Risks: colonoscopy is safe for most people, but rare complications can occur, including perforation (~1 in 1,700) and heavy bleeding (~1 in 2,400). No test is perfect—about 3 in 100 colonoscopies may miss a cancer or a polyp, and cancer can still develop between tests.

What actually happens

You’ll meet a Specialist Screening Practitioner (SSP) to discuss the test and your fitness for it. Beforehand, you’ll follow written instructions for bowel preparation (a strong laxative and a short diet plan) so the colonoscopist can see clearly. The procedure itself is usually 30–45 minutes (plan around 2 hours for the visit). A painkiller and/or sedative can be offered; if you have sedation, you shouldn’t drive or operate machinery for 24 hours. Afterward, the team will tell you if polyps were removed or biopsies taken, and results are usually sent within 2 weeks.

Symptoms still matter

Screening is for people without symptoms. If you notice blood in your poo, changes in bowel habit, tummy pain or a lump, unusual tiredness, or unexplained weight loss for 3 weeks or more, contact your GP, even if you’ve recently had (or are waiting for) a colonoscopy.

Other ways to lower risk

Alongside screening, the leaflet highlights everyday steps, physical activity, healthy weight, more fibre/veg/fruit, less red and processed meat, less alcohol, not smoking, and notes that daily aspirin can help prevent cancer in people with Lynch syndrome. Do not start aspirin on your own; talk to your GP or genetics team first to weigh benefits and side-effects for you.

Useful support

NHS Bowel Cancer Screening Helpline: 0800 707 60 60 (to request or query an appointment, including if you’re 75+).
Lynch Syndrome UK: information, community support and our Patient Passport.
Lynch Choices (canchoose.org.uk): step-by-step decision aids you can use before clinic, including one on aspirin and another on risk-reducing surgery.
Your genetics team or GP can answer personal questions about timing, prep and medicines.

This is for general information only and isn’t a substitute for medical advice. Please speak to your clinical team about your own care.