Lynch Syndrome UK supports Gynae Cancer Awareness Month

September is Gynaecological Cancer Awareness Month, a moment when charities and clinicians spotlight the five gynae cancers and how to spot them early. It’s also a good time to make sure Lynch syndrome sits alongside BRCA in every conversation about hereditary risk. That’s the spirit of a recent message from Dr Stefania Vicari (Senior Lecturer in Digital Sociology, University of Sheffield), whose research explores how social media shapes the way people understand and live with hereditary cancer risk.

Lynch syndrome doesn’t just raise the risk of bowel cancer; it also increases the risk of womb (endometrial) and, to a lesser extent, ovarian cancer. For many women and people with a womb, this is the first reason Lynch should be front-and-centre in gynae cancer awareness, alongside symptom awareness and timely testing.

Dr Vicari’s team studies how platforms like Instagram, TikTok and X help (and sometimes hinder) people who carry BRCA and Lynch syndrome variants. Their work shows why online spaces can be powerful for connection, learning and advocacy, yet also why balanced, evidence-based content is essential. If you use social media for support, it’s worth sense-checking posts against trusted NHS and charity resources.

Coinciding with Gynaecological Cancer Awareness Month, Dr Vicari and her team have announced they have been awarded funding for a new project: "New Genetics, Same Old Surgeries? Cancer Risk, Personalised Medicine and Women’s Health (NeGen-SOS)". The research project, launching in January 2026, will see the research team and an advisory board including Lynch Syndrome UK Trustee Tracy Smith, will explore cultural influences, practices and implications of cancer predictive genetics for women's health, with a focus on individuals with an increased risk of gynaecological cancer. 

So what can you do this month if you live with Lynch syndrome, or support someone who does?

• Know your gynae cancer symptoms and act promptly (womb & ovarian cancers especially); screening for bowel cancer doesn’t replace attention to gynae symptoms.

• Use trusted tools to prepare for appointments and decisions (for example, whether/when to consider risk-reducing gynaecological surgery).

• Share credible information in your networks. Social media can amplify good advice, especially when it links back to reliable sources.

At Lynch Syndrome UK, we’re grateful to researchers like Dr Vicari and her colleagues for keeping patient voices at the centre of this conversation, and for investigating how online communities can lift confidence and cut through confusion. As awareness grows, we can help more people recognise symptoms, access genetic testing, and make informed, values-based choices about prevention and care.

Useful support

• Lynch Choices (decision aids for aspirin and risk-reducing surgery) — use them with your clinical team.

• LSUK Information & Support — our Information Centre, Patient Passport and peer community.

• Gynae Cancer Awareness Month — learn more and share resources.

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