Familial Cancer Clinic

Lead: Usha Menon

What we do

The service provides risk assessment, counselling, screening and prophylactic surgery to women at high risk of ovarian, tubal, peritoneal and/or endometrial cancers due to a family history of the disease.

Risk Assessment

In the UK, there are approximately 6600 new cases of ovarian cancer and 7000 cases of endometrial cancer diagnosed annually. Of them, an estimated 5-10% may be the result of a familial predisposition.

Families at high risk of gynaecological cancers belong broadly to two groups:

1. those with a family history of a) breast or b) breast and ovarian or c) ovarian cancer alone who are at risk of carrying a BRCA 1 or 2 gene mutation
2. those with a family history of colorectal, endometrial, small bowel, ovarian, ureteric and renal pelvic cancers suggestive of Lynch Syndrome or hereditary nonpolyposis colorectal cancer(HNPCC) who may have a gene mutation in MLH1, MSH2, MSH6 and PMS2. In such families, cancers occur in more than one family member and usually through several generations.

Women from these families who are first degree relatives of those affected with cancers have a 10% or greater life time risk of ovarian cancer. In addition, Lynch syndrome women have a 25-60% lifetime risk of endometrial cancer.

Referral Criteria

The referral criteria for woman at risk of ovarian and endometrial cancer who are seen at the Familial Cancer Clinic are summarised here.

Risk Management

In the clinic, all women undergo comprehensive risk assessment and counselling. Women confirmed to be at high risk can consider the following risk management options:

• risk reducing laparoscopic surgery to remove the ovaries and tubes after a woman has completed her family. Usually such surgery is undertaken in the forties. In Lynch syndrome women with a significant risk of endometrial cancer, the uterus is also removed
• screening for ovarian* and endometrial cancer** (as appropriate)
• life style and contraceptive advice
• referral for breast or bowel screening as appropriate. 
• referral to clinical genetics (for assessment and genetic testing if appropriate)

* It is not yet known whether ovarian cancer screening is effective and will save lives. Eligible women opting for screening were recruited into the NCRN UK Familial Ovarian Cancer Screening Study (UKFOCSS). This involved annual transvaginal ultrasound and 4 monthly serum CA125 testing. This study has now closed.  Results are awaited in 2013.   The view of the UK National Screening Committee is that NHS commissioners and providers need to wait for the results of the national trial before any further screening activity is planned on the NHS. 

In a focus group exercise with high risk women, participants requested that the UCLH continue screening during the two year interim between the end of the trial and 2013 when it reports.  They expressed willingness to fund the costs of interim screening themselves, if it could continue at UCLH.  Self funded screening for high risk patients will commence from January 2012 at UCLH.   Please contact the Familial Cancer Clinic for further details.

** In addition, endometrial cancer screening using yearly transvaginal ultrasound scans and outpatient hysteroscopy & endometrial sampling is also available for women with Lynch Syndrome.

Symptoms awareness

The Department of Health has produced an information sheet on the key symptoms of ovarian cancer.  Please contact the Familial Cancer Clinic if you wish to have this leaflet  posted to you.  Alternatively you can see the sheet here