I’m 34 years old, BRCA1+ and have been sterilised. What is the latest information regarding the best age for prophylactic oopherectomy? Could you also advise the best route I need to follow as my GP isn't very forthcoming.
Your local genetics service should be able to help you make decisions regarding your risk reducing options. If you have previously been to a genetics clinic you can contact them directly and ask to speak to a genetic counsellor. Alternatively, your GP can make a referral to them.
There is no national screening programme for ovarian cancer as there's no evidence to date that screening helps in the BRCA population, so surgery is one option to reduce your risk. A bilateral salpingo-oophrectomy is an operation to remove both your ovaries and fallopian tubes. This operation will greatly reduce your risk of developing ovarian cancer and to a lesser extent reduce your risk of breast cancer. There is still a small chance that you could develop an ovarian-like cancer, called primary peritoneal cancer; this is a cancer of the cells lining your abdomen and pelvis which are not removed during the operation.
With regard to the best age for surgery, this is a difficult one. We know that for women with a BRCA mutation, the risk of ovarian cancer does increase with age. There is a relatively small risk age 20-40 but then a rapid increase. The risk for BRCA1 carriers probably starts to rise a little earlier than for BRCA2 carriers. There is no definitive guidance on when the surgery should be done; we do know that the operation has greatest benefit if it’s carried out before you go through the menopause. Removal of both of your ovaries will mean that you immediately start the menopause as you will no longer be producing the female hormones oestrogen and progesterone.
A new study is looking at the feasibility of a two-stage procedure to remove just your tubes initially (as this is where BRCA-related ovarian cancers originate from) and leaving your ovaries in place until a later date. This will reduce your risk of developing ovarian cancer without you starting the menopause. This won’t be available routinely for several years but you may be offered this procedure if your local hospital is taking part in the study.
The Daisy Network provide information on this and your medical team will discuss with you the advantages, disadvantages and risks of taking hormone replacement therapy (HRT) to manage the side effects of early menopause.
Surgery has a very big impact on you both physically and emotionally. It is important that you take your time and discuss all the advantages and disadvantages with a genetic counsellor and your medical team before making a decision. There is no right or wrong choice and your medical team will support the decision that you feel is best for you. Risk reducing surgery cannot guarantee that you will not develop ovarian or breast cancer; there is still a small risk of developing one or both cancers.
An alternative way to reduce your risk is to take the oral contraceptive pill. Women who have used the oral contraceptive pill for five years or more are less likely to develop ovarian cancer than women who have never used it. Using the contraceptive pill can reduce your risk of ovarian cancer by as much as 50 per cent. Although the contraceptive pill has been shown to reduce the risk of ovarian cancer, it is not suitable for all women and research has shown that it can slightly increase a woman’s risk of developing breast cancer. If you are thinking of taking the oral contraceptive pill you should first discuss your options with your GP or genetic counsellor.
Another organization you may wish to get in touch with is the BRCA Umbrella who provide a forum for women with the BRCA1or 2 mutation to discuss options and share information.