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