The family history clinic is run by a specialist nurse with the support of the Cancer Genetics Department at Guy’s Hospital, London, and the consultant gynaecological oncologists.
Who should attend the family history clinic?
If you have a family history, which includes close family members who have had ovarian cancer and possibly breast cancer, it may be appropriate for you to attend the family history clinic.
What will happen at the family history clinic?
You will be asked for a complete family medical history, covering three generations and on both sides of the family. Do not worry if you cannot provide information about everyone in your family, any information that you can provide will be helpful.
How will my risk be assessed?
Your risk will be assessed by looking at your family history, taking into account the ages at diagnosis, and also the relationship between those relatives who have had cancer, both to each other and to yourself. Both sides of the family are looked at separately.
What is the risk of my developing ovarian cancer in my lifetime?
Your risk of developing ovarian cancer will depend mainly on your family history. There are broadly three groups of women:
Women at low risk
Most women do not have a close relative who has had ovarian cancer. Such women have a low risk of developing ovarian cancer themselves. Their risk is approximately 1% in their lifetime (ie, one in 100) will develop ovarian cancer). For comparison the risk to a woman of developing breast cancer is higher (approximately 8% or one in 12).
Women at intermediate risk
Some women have one close relative who has had ovarian cancer (mother, sister or daughter). These women are at intermediate risk of developing ovarian cancer in their lifetime, (approximately 4%) which is still less than their risk of developing breast cancer. Others have a slightly increased risk as they have a combination of relatives with breast and ovarian cancer in the family.
Women at increased risk
A small number of women belong to families with an unusually high number of cases of ovarian cancer alone, or breast and ovarian cancer or colon and ovarian cancer. This group includes some women with two or more close relatives who have had ovarian cancer or relatives who developed breast cancer at a young age. These women are at an increased risk of ovarian cancer and have a lifetime risk of 15% or more (one in seven or more)
In some families, the increased risk of cancer is related to an inherited faulty gene, which passes down through the family. Two of the genes involved in ovarian cancer, BRCA1 and BRCA2 have been identified. They are protective genes involved in repair of damaged DNA. An alteration (or ‘mutation’) in either of these genes results in an increased susceptibility to cancers of the ovary and breast. Testing for these genes is currently done using blood from the person who has had cancer. These tests can be difficult and testing is not without problems. Some women with increased risk may be confirmed carriers of a mutation in the BRCA1 or BRCA2 gene, following genetic testing. Other women with increased risk may not have had genetic testing for various reasons. The lifetime risk of ovarian cancer may be as high as 40-50%. Women at risk of ovarian cancer are also at increased risk of both cancer in the fallopian tubes, and cancer arising from the lining of the pelvis (Primary peritoneal cancer).
How often are the family history clinics held?
The family history clinics are held once a month at the Kent and Canterbury Hospital.
How can I be referred to the family history clinic?
Your GP can refer you to the family history clinic, or you may be referred through the gynaecological oncology clinic.
If I am found to have a risk of ovarian cancer, what can be done for me?
If you are found to be at risk, options will be discussed with you, including early breast screening and ovarian screening. Ovarian screening at present is carried out only as part of a study run by Cancer Research UK. The aim of ovarian screening is to identify ovarian cancers at the earliest possible time. Screening takes the form of two tests: a blood test and an ultrasound scan, undertaken on an annual basis. At this time, however, we do not know how effective this is in saving lives from ovarian cancer.
If you fall into the appropriate risk category, and would like to be referred to a genetics counsellor, possibly with a close relative who has had ovarian or breast cancer, this can be arranged for you.
Would having an operation reduce my risk?
If you have been found to be at an increased risk of developing ovarian cancer on the basis of your family history, and following discussion both with your consultant and a specialist in genetics, it may be considered appropriate for you to have an operation.
It is important that your risk is confirmed before considering an operation.
What would an operation involve?
The operation of prophylactic bilateral salpingo-oophorectomy, or BSO, is surgery to remove your tubes and ovaries. It is offered to women at high risk of developing ovarian or tubal cancer. The aim is to remove the tissue in which the cancer arises. BSO can usually be performed by laparoscopic (keyhole) surgery.
What are the main advantages of having BSO?
As well as eliminating the risk of ovarian and tubal cancer, BSO has also been found to decrease your risk of developing breast cancer by 50%. This effect is mainly in women undergoing surgery before the menopause.
What are the main disadvantages of undergoing BSO?
Apart from risks associated with the operation, you will not be able to become pregnant once your ovaries have been removed. You will experience an early and immediate menopause, and your consultant will discuss the use of HRT to lessen the symptoms of menopause, such as hot flushes. If you have already reached the age of menopause, the use of HRT may not be advised, but alternative ways to relieve symptoms will be discussed with you.
Is there anything I can do to help myself?
Awareness of symptoms of both breast and ovarian cancer will be discussed with you in the family history clinic.
For further information about the family history clinic please contact Trish Swift on 01843 225544 ext 62104
Adapted from UCLH Gynaecological Cancer Centre 19 May 2005.