For women with a faulty BRCA gene
FAQ's
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 70% of women (7 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. There is some evidence to say that chances of cure may be better for BRCA2 cases than BRCA1. Better treatments are of course being developed every year. It is possible 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 all of the breast tissue. This is called a "prophylactic mastectomy". 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 delay the onset of or possibly even prevent breast cancers which are sensitive to these drugs. However, it is not known whether they can reduce the chances of dying of breast cancer. Research using these drugs is ongoing and you could participate in this research if you wished.
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).
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 is very small before age 40 (particularly if you have a change in the BRCA2 gene) but increases steadily after this. 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 pelvic ultrasound. MRI screening will also be discussed. 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. How do I get more information?
Answer. When you come to the clinic all these issues will be discussed further.