Lynch Syndrome UK

Endometrial (Womb) Cancer

Endometrial cancer is a cancer of the lining of the womb. Typical symptoms include bleeding between periods, unusual bleeding during a period eg clots or flooding, a brownish discharge after periods, a pinkish or clear watery discharge or any bleeding if post-menopausal. If you have any of these please seek medical help, do not delay. Currently there are approx 9,000 cases a year in UK of which only approx 5% are pre-menopausal.

The risk of this in lynch syndrome carriers depends on particular gene but can be up to 60% by age 70, with the risk really increasing from about age 40. Within the medical community (especially GPs) a family history of this will not necessarily be recognised as indicative of lynch (unlike bowel/colorectal which may well be recognised). Also, since the age at onset in lynch is typically 15-20 years before population median norm of 63, the possibility may be dismissed and younger women do tend to struggle to get a diagnosis and hence frequently have a later stage diagnosis.

It is a highly treatable disease with early diagnosis meaning a survival of 92% with stage 1. Normal treatment is by surgery with a total hysterectomy.

Screening for those with identified lynch syndrome is sometimes possible - dependent on trust policy - and includes transvaginal ultrasound and womb biopsies. This is generally regarded as being ineffective in increasing survival and hence not all trusts will offer it. The general recommendation is that women should consider the possibility of a preventative hysterectomy by around the age of 40 after family is completed. Until that point use of the combined contraceptive contraceptive pill or the mirena coil can have some protective effect.

If you are a known lynch carrier please do talk about this with your genetic counsellor or join our closed support group on facebook to chat to our many members who have faced these decisions.

If you have a family history of endometrial cancer - with or without colorectal - then do please ask here for more help and we will guide you as to how to have your family risk level assessed.

Thank you for reading this.

Edited to updated figures for annual diagnosis

6 Replies

Actually the latest up to date figures for womb cancer from CRUK are from 2013 and they say 9,022 were diagnosed with the numbers increasing by around 10% a year.

There is a lack of awareness of womb cancer and sadly many women have never heard of it before being diagnosed.

Sadly we a t Womb Cancer Support UK have heard from many women and they say that their GP's have often never heard of Lynch Syndrome and they have to fight to get a referral for testing.

Keep up the great work you are doing in raising awareness of LS.


Thank you Kaz and apologies for the incorrect figures - I will edit and use your up to date ones. Keep plugging on - we all have the same aim of raising awareness.

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No worries, it's sometimes hard to get accurate figures. Hoping CRUK will update soon with new statistics.


Yes thanks Womb Cancer Support UK. And indeed, we are speaking out to all women, regardless of whether they have LS or not. Every woman, regardless of her age and family history and whether or not they have been diagnosed with a genetic cancer condition could get womb cancer. Caught early, it is easily treatable. Don't make excuses - find the time, don't be embarrassed.

There may be as many as 85,000 women in the UK who don't yet know they have Lynch syndrome. Their risk of womb cancer is much higher so until we have better genetic testing, ALL women should regard unusual menstrual bleeding before of after the menopause as needing an "urgent" appointment.

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Butekaz your a star!!! Thank you for the update on stats lovely lady xx

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The risk of cancer of the womb in Lynch syndrome can be reduced by measures that cut down proliferation of the womb or uterus. That means that if you have LS and wish to use a hormonal contraceptive, there are several alternatives that reduce your risk of womb cancer. All of these help:-

the combined oral contraceptive,

the progesterone containing Mirena coil

long acting injection (eg depot provera)

progesterone only mini-pill .