Introducing Lynch Choices TM

Lynch Choices: a new, trusted companion for making prevention choices for those with Lynch syndrome

When you’re living with Lynch syndrome, you’re asked to make a series of important, personal decisions over time about screening, medicines, and sometimes surgery. That’s exactly where the Lynch Choices website comes in: a clear, compassionate website created with people affected by Lynch, clinicians, and researchers to help you weigh up options and feel ready for conversations with your healthcare team.

At its heart, Lynch Choices offers two step-by-step decision aids for common prevention questions:

• Aspirin to lower cancer risk. The site explains who aspirin may (and may not) be suitable for, what the potential benefits and side effects are, and encourages you to decide with your GP or genetics service rather than starting on your own. Each section provides short, plain-English summaries before going into further detail, and ends with a personal summary you can take to your next appointment.

• Risk-reducing gynaecological surgery. For people considering removing the womb (and sometimes ovaries/fallopian tubes), Lynch Choices sets out what the operation involves, recommended timing, the role of hormones and menopause, and how gene-specific risks shape choices. Again, it’s designed to help you clarify what matters most to you and bring that into shared decision-making with your gynaecologist.

Prevention is bigger than any single decision, and the site recognises that. There’s practical information on cancer screening, including why having a colonoscopy every two years is encouraged for people with Lynch, and how to find the latest UK guidance that applies to your gene variant. It also explains why, right now, routine screening hasn’t been shown to save lives for womb or ovarian cancer, and points to research studies you may hear about in clinic.

Because Lynch is a hereditary family condition, Lynch Choices shares information on talking to relatives about your result, with tips on who may need to know and where to get support for those conversations. You’ll also find sections on living with genetic risk, lifestyle, and a curated “More support” area signposting high-quality resources for both patients and healthcare professionals.

What makes Lynch Choices especially reassuring is how it was built. Funded by Cancer Research UK and developed at the University of Southampton with people who have Lynch, and with input from Lynch Syndrome UK, the site has been co-designed from the ground up to be usable, balanced and sensitive to real-world worries. That ethos is reflected in published work describing the project’s patient-partnered approach to creating decision aids for hereditary cancer prevention.

How should you use it? Many people dip into a session at home, note down what feels important, and then bring their summary into clinic. The goal isn’t to tell you what to do, it’s to help you feel informed, heard and ready to decide together with your medical team. As the site itself emphasises, it’s not a substitute for medical advice, and choices like aspirin or surgery should be made with your GP, genetics service or specialist.

At Lynch Syndrome UK, we’re delighted to spotlight Lynch Choices as a credible, user-friendly resource that complements our work and lived-experience support. If you’re navigating a decision now, or simply want to be prepared for the future, Lynch Choices is a useful and informative place to start, and to return to as your life and priorities evolve.

If you missed this year's Lynch Syndrome UK Conference, watch the recording of Dr Kelly Kohut, Lynch Choices Lead, sharing this valuable resource on our YouTube channel.

Explore Lynch Choices at canchoose.org.uk and, as always, talk to your clinical team about what’s right for you.