Getting your test results can be a very emotional time whatever the outcome. If you receive a negative result (no BRCA mutation is found), you will probably feel very relieved. If you receive a positive result (a BRCA mutation is found), you may feel very shocked, even though you knew that the test could be positive. For some people, it is a relief to know and not be uncertain any more. If several members of your family have had the test, you may also be trying to cope with their results as well. It is not unusual for members of the family who have a negative result to feel guilty if other members have a positive result. It may be helpful to discuss your feelings with the genetic counsellor.
If you receive a positive result, you may be concerned about who to tell and how to tell them. Your genetic counsellor will be able to provide you with helpful advice. Some clinics have prepared letters you can send out to relatives but you may prefer to tell people face to face. Or you may want to do a mix of both, depending on which relative it is and your relationship with them.
Many people are concerned about getting health and life insurance after having a genetic test. Currently the Association of British Insurers (ABI) and the UK Government have agreed to a temporary ban on asking people for the results of genetic tests for cancer if they are unaffected. If they have had cancer it is part of the medical record which is declarable. This agreement is called a Concordat and Moratorium. The agreement lasts until 2019, when it will be reviewed. Cancer Research UK provide excellent support and advice on receiving your test results.
If your family has a known BRCA mutation and your test comes back negative, it means that you aren’t carrying that particular mutation. This means that you are not at increased risk of BRCA-related cancer. You could still develop cancer however due to other factors. You can still reduce this risk by choosing a healthy lifestyle including a well-balanced diet, exercise and avoiding smoking.
If doctors haven’t found a BRCA mutation in your family but you have a strong family history of cancer, you could still be at higher risk of cancer than the general population due to familial factors which cannot be found. If this happens, you and the genetics specialist will work out the best way to keep a check on you to find cancers early if you do develop one. The uncertainty of this can be very difficult and it is important that you have the support that you need.
If you receive a positive result, you will probably be trying to work out what it all means and what to do next. Most people who have a positive result will feel a range of emotions including worry, anger, and anxiety. Your genetic counsellor can help you deal with this and talk you through your options. Remember that not everyone who has a faulty gene goes on to develop cancer. If you have a positive result, you may wish to consider various lifestyle changes, screening or treatment options to reduce your risk of developing cancer. See below for more details.
If you receive a positive result and are considering starting or expanding your family in future, you may wish to consider the option of Prenatal Genetic Diagnostics (PGD). This is a procedure that aims to allow families to avoid passing on an inherited condition to their children through in vitro fertilisation (IVF). Ovarian Cancer Action provides useful information on starting a family for BRCA carriers.
If you are BRCA positive, you can help to reduce your risk of developing cancer through risk reducing treatment and lifestyle changes. When considering your options, it is worth thinking about what treatment options are available, how much they will reduce your risk of developing cancer and any immediate and long term side effects and impacts on fertility and family planning. Whatever you decide to do, your genetic counsellor will be able to advise you on an appropriate course of action that works for you and your family at this time in your life, taking into account life choices such as when to have children and the choices you make about work. An overview of some of these options are given below:
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Eating a healthy well balanced diet, doing regular exercise, maintaining a healthy weight, reducing alcohol intake and not smoking can all reduce your risk of developing cancer.
Surgical treatment options include:
Some women choose to have both their ovaries, tubes and breasts removed. Choosing to have treatment to reduce your risk is a very personal decision and will be affected by your family history of cancer and your age. Surgery doesn’t necessarily stop you getting cancer completely, but will reduce your risk significantly of getting that particular type of cancer. Surgery can also change how you feel about yourself. For some people the reduction in risk makes their lives much easier. For others the changes in their body, whether visible or not, are very difficult to cope with. It is important to try to think about how you will feel if you do have treatment and how you may feel if you don’t.
Researchers have also found that certain medication can prevent or delay the onset of breast cancer in women at high risk. If treatment is an option, the timing of it will be affected by the type of cancer you are at risk of developing and the mutation you have. A range of information providers and support organisations offer further information on managing the risk of cancer including:
Written by Jnetics.
Approved by Professor Rosalind Eeles Professor of Oncogenetics at The Institute of Cancer Research, The Royal Marsden Hospital London
Last review: 10.09.2016