Help and support
- If you are worried about your chance of getting womb or ovarian cancer, you can speak to a gynaecologist.
- Your GP or genetics service can refer you to a gynaecologist, if you have not seen one before.
- You can click here to see where your local genetics centre would be, so you know what to expect.
The Eve Appeal
Information and support for anyone making a decision about a hysterectomy, or affected by gynaecological cancer: eveappeal.org.uk.
The Eve Appeal has made A Guide to Lynch Syndrome which is also available in an Easy Read format.
They also have nurses you can speak to about making your decision:
0808 802 0019 or nurse@eveappeal.org.uk.
Peaches Womb Cancer Trust
Information about womb cancer, signposting to support groups and stories from people who have had womb cancer.
Macmillan Cancer Support
Macmillan Cancer Support has a free helpline that's open every day from 8am to 8pm. They're there to listen if you have anything you want to talk about.
0808 808 00 00.
If you have been diagnosed with cancer, this support may help you:
Cancer Research UK
Support for coping with womb cancer www.cancerresearchuk.org.
MIND
MIND charity can provide support for your mental health if you feel you are struggling: www.mind.org.uk.
Lynch syndrome patient groups
Lynch syndrome UK including free information booklets, and Patient Passport.
Lynch syndrome Ireland including information links such as thisisGO, an online personalised resource for people impacted by gynaecological cancer.
Further reading if you want to read more:
Recommendations about the operation to remove your womb, ovaries and fallopian tubes:
British Gynaecological Cancer Society Uterine Cancer Guidelines: Recommendations for Practice 2021. Click to download pdf
The Manchester International Consensus Group recommendations for the management of gynecological cancers in Lynch syndrome 2019. Click here.
The UK Cancer Genetics Group gene-specific Lynch guidelines: UKCGG leaflets and guidelines - Cancer Genetics Group
Chances of getting womb or ovarian cancer:
Number of cases for people with Lynch syndrome. Click here if you want to see a graph of how your chance of getting cancer changes over time. This graph was developed with families with Lynch syndrome and can show personalised information depending on your age. But please remember that the graph does not compare your chances of cancer with the general population, and people with Lynch syndrome are not at a higher risk of some of these cancers than the general population. You might want to talk about these graphs with your gynaecologist to help you understand what it means for you. The graph on this website calls the womb the ‘endometrium’.
Number of cases for the general population:
Information about the symptoms of womb and ovarian cancer:
Further reading about Lynch syndrome:
Royal Marsden A beginner’s guide to Lynch syndrome booklet.
Acknowledgements:
Huge thanks to the patients and medical experts who supported the development of this session. Our International Lynch Decision Aid Stakeholder Panel includes patients, people representing charities and support groups, medical and research experts including doctors, genetic counsellors, oncologists, surgeons, GPs, nurses, psychologists, and communication specialists.
Thanks very much to Lily Barnett @gcnotes for the images on this website.
Page last updated on: 16/12/2023