For women with a faulty BRCA gene
Q. What is my risk of getting breast cancer?
Answer. For women who carry a breast and ovarian cancer gene, the risk of getting breast cancer is approximately 50% (1 in 2) by age 50 and 70% (7 in 10) in their lifetime. It is therefore not inevitable that you will get breast cancer. It is not possible to predict which women will get breast cancer or at what age they will get it.
Q. What is my risk of ovarian cancer?
Answer. This depends to some extent on whether you have a change in the BRCA1 gene or the BRCA2 gene. If it is in BRCA1, the risk is approximately 20% (1 in 5) by age 50 and 40% (2 in 5) in your lifetime. If it is in BRCA2, the risk is approximately 5% (1 in 20) by age 50 and 20% (1 in 5) in your lifetime. Again it is not possible to predict which women will get ovarian cancer or at what age they will get it.
Q. If I get breast or ovarian cancer, what is my chance of being cured?
Answer. Within a screening program at least 80% of women (8 in 10) who get breast cancer will not die of breast cancer, although this figure may be less when young women are screened. This figure is at most 50% (1 in 2) for ovarian cancer. Better treatments are of course being developed every year. It is very likely that more effective treatments will become available.
Q. What can be done to prevent breast cancer?
Answer. At present, the only way breast cancer may be prevented is to surgically remove the breast tissue. This is called a "risk-reducing mastectomy". The risk of breast cancer after such a procedure is extremely low (although not zero as it is impossible to be sure that all breast tissue is removed). Many women undergo breast reconstruction at the same time as prophylactic mastectomy. Other ways in which breast cancer may be prevented are being investigated including the use of drugs. Certain drugs (e.g. Tamoxifen) may prevent or delay the onset of breast cancers that are sensitive to these drugs. However, it is not known whether giving Tamoxifen as prevention can reduce the chances of dying of breast cancer.
Q. What can be done to prevent ovarian cancer?
Answer. Currently, the only way of preventing ovarian cancer is to surgically remove the ovaries. This is called a "prophylactic oophorectomy". It is usually recommended in your late 30's if you do not wish any more children. After surgery you would usually start hormone replacement therapy (HRT). The role of screening for ovarian cancer is currently debated.
Q. How successful is prophylactic surgery?
Answer. Because the breast and ovarian cancer genes were only discovered a few years ago we do not know the long-term outcome of prophylactic surgery for women who carry these genes. It is known that both breast and ovarian cancer can occur even after prophylactic surgery. This is because it is not possible to be sure that 100% of all breast and ovarian tissue is removed. However, evidence does suggest that this is rare and prophylactic surgery does reduce the risk of these cancers to very low levels.
Q. At what age should I consider prophylactic surgery?
Answer. It is very uncommon to get breast cancer before age 30. The risk for carriers of the gene is only approximately 3% (1 in 30). After age 30 the risk does start to increase considerably. For ovarian cancer the risk varies according to which gene you have the change in. For women with a BRCA1 gene mutation, we currently recommend having the ovaries removed at age 35 and for women with a BRCA2 gene mutation we recommend age 45. The age you should consider prophylactic surgery does however depend on many factors. When you come to the clinic, these issues will be discussed.
Ultimately however, the choice of whether or not to have prophylactic surgery and at what age to have it is entirely yours. Before making any decisions it is important that you have all the information available and have had time to consider it and discuss it with your close friends and family. There is never any urgency about performing prophylactic surgery.
Q. What happens if I don't have prophylactic surgery or I delay my decision?
Answer. Regardless of whether you choose to have prophylactic surgery or not you can be screened regularly by annual clinical examination, mammography and MRI. Delaying a decision does involve accepting a degree of risk that you may get breast or ovarian cancer. Depending on your age, this risk may be very small.
Q. Do I need to be screened after I have had risk reducing surgery?
Answer. No. There is no benefit is having screening after you have had risk reducing surgery. One of the benefits of having risk reducing surgery is that you don't have any on-going anxiety of screening.
Q. How do I get more information?
Answer. When you come to the clinic all these issues will be discussed further.