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What would the results mean for me?

Main points

  • Having an altered BRCA gene means that there is a higher chance of future breast and ovarian cancer.
  • If you have an altered BRCA gene you can choose to do nothing, or consider risk-reducing surgery, regular screening and make healthy lifestyle choices.
  • Some people may find it stressful to have genetic testing.
Will taking the test have any impact on my breast cancer treatment?
  • Genetic tests sometimes help to make decisions about surgery, chemotherapy, targeted treatments and research trials. Some women have chemotherapy before surgery and may have a genetic test while they are waiting for their surgery.
  • There are research studies that are looking at treatments which are targeted at treating or preventing cancers linked to altered BRCA genes. For instance, PARP inhibitors are a type of medication which is being tested to treat BRCA-related cancers. You may be offered the chance of taking part in research studies shortly after diagnosis. If you are interested in research studies in the area, see the page on research trials at the bottom.
What would having an altered gene mean for my future chances of cancer?

Having an altered BRCA gene means that you have an increased chance of developing future cancers. This includes new breast cancers and ovarian cancer (and prostate cancer in men). The next section includes more detailed information about this.

Click here if you would like to read more about this, including figures.

Breast cancer

If I've had breast cancer, what are my chances of having a new primary breast cancer in the next ten years? Click to enlarge

Chance of developing breast cancer with altered BRCA gene

  • During the 10 years after diagnosis, women who have altered BRCA genes have about a 20% chance of having a new primary breast cancer on the opposite side. During the 10 years after diagnosis about 5% of breast cancer survivors who do not have an altered BRCA gene have a new primary breast cancer on the opposite side.

Ovarian cancer

The chance of having ovarian cancer over lifetime: Click to enlarge

Chance of having ovarian cancer over lifetime

  • Around 2 in 100 women in the general population will get ovarian cancer at some point in their life.
  • Around 40 out of 100 women with BRCA1 will get ovarian cancer at some point in their life.
  • Around 20 out of 100 women with BRCA2 will get ovarian cancer at some point in their life.

Other cancers

Having an altered BRCA gene can also increase your chances of other cancers, such as pancreatic and skin (melanoma). These cancers are still very uncommon.

Male BRCA2 carriers have an increased chance of developing prostate and breast cancer.

What are my options if I have a positive result for an altered gene?

If you have an altered gene, you will be given options of what to do next. There are several things you can do to help reduce your chances of future cancers. You do not need to make a decision straight away. You would discuss your options with your clinical team and may consider:

Taking no action
  • You can choose to take no action. You will still be offered regular mammograms.
Having increased screening
  • When women have had a breast cancer diagnosis, they are offered regular mammograms. However, if you have an altered BRCA gene, you may be offered increased screening, for instance MRI scans.
Making healthy lifestyle choices
  • Eating a healthy diet, exercising, not smoking, drinking little or no alcohol and being a healthy weight can help to reduce the chances of getting cancer.
Having a risk-reducing mastectomy (surgical removal of both breasts)
  • A risk-reducing mastectomy can help to reduce your chance of a new primary breast cancer by 90-95%. This surgery does not reduce the chance of your current cancer returning somewhere else or in breast tissue.
  • You may consider having a reconstruction after a risk-reducing mastectomy. Risk-reducing surgery can be done with or without breast reconstruction.
  • You do not need to decide about this surgery straight away.

Macmillan provides further information about risk-reducing breast surgery: click here.

Having a risk-reducing salpingo-oophorectomy (surgical removal of ovaries and fallopian tubes)
  • A salpingo-oophorectomy involves removing the ovaries and fallopian tubes. This surgery reduces the chances of both breast and ovarian cancers. Some tissue in this area (the peritoneum) cannot be taken out. There is still a small chance cancer which behaves like ovarian cancer can happen in this tissue.
  • The risk of developing ovarian cancer could be reduced by 80-90%. Out of 100 women with an altered BRCA1 gene, around 40 will develop ovarian cancer at some point in their life. If those women had an oophorectomy, around 5 would develop ovarian cancer at some point in their life.
  • Having this surgery will mean that you are no longer able to have your own children. It will also cause you to have an early menopause. Some women have fertility treatments before chemotherapy and choose to wait to have the surgery after having had children. The chances of getting ovarian cancer is low at younger ages.
  • You do not need to decide about this surgery straight away.
Take medication
  • Some women take hormone therapies for their breast cancer. This can also reduce the chance of getting a new breast cancer.
What are my options if I choose not to have a genetic test?
  • If you choose not to have a genetic test, you may still be able to have risk-reducing surgery and increased screening. This will depend on your personal situation and if you have a high chance of getting more cancers. NHS guidance click here suggests that women who have had breast cancer should have screening for 5 years.
  • Women who remain at a high risk of future cancer or have a high chance of having an altered gene may be able to have screening after this.
  • You would need to talk to your healthcare professionals about your options.
How might having a genetic test make me feel?
  • Some women may find waiting for BRCA test results makes them feel worried or stressed. Finding out the results and the implications of these results may also be stressful for some people.
  • Other people may not be too worried or may find knowing the results is less stressful than not knowing.
  • You don't have to decide about genetic testing right away.
  • There is a link to available support at the bottom of the page. You may find it helpful to talk to people who have gone through this or to a healthcare professional.
Will taking the test have an impact on my life insurance?
  • Insurance companies may increase your insurance premium because of your personal or family history of cancer. Since you have had a cancer diagnosis, this may increase your premium. You need to disclose your diagnosis and treatment for breast cancer when starting or renewing insurance policies. It is very unlikely that genetic testing results would affect your personal insurance situation more than your cancer diagnosis.
  • If your test result shows that you do not have an altered gene, the insurance company may be able to take this into account.
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