PUBLISHED ON: 25 June 2013

National guidance published today makes new recommendations for the testing prevention and monitoring of familial breast cancer.

The guidance published by the National Institute for Health and Care Excellence (NICE) includes recommendations for people who’ve had breast cancer and also have a family history of breast cancer and those who haven’t had breast cancer but are at increased risk.

The guidance is not new but replaces previous guidance published in 2006.

Carolyn Rogers Senior Clinical Nurse Specialist at Breast Cancer Care said: ‘These guidelines are an exciting development that could help many hundreds of people with confirmed or a potential family history of breast cancer now and in the future.’

What new recommendations does the guidance make?

New recommendations include:

  • more screening for people who’ve had breast cancer and who remain at high risk as well as for those who haven’t had breast cancer but are at increased risk
  • the use of drugs to help prevent breast cancer in women at high risk
  • new guidance on who should be referred to a specialist genetics clinic or offered genetic testing.

These recommendations are explained in more detail below.

What is familial breast cancer?

A small number of people have an increased risk of developing breast cancer because they have a significant family history. This is called familial breast cancer.

This may be due to an altered breast cancer gene. The two genes that are most often found in familial breast cancer are called BRCA1 and BRCA2. Another rarer gene called TP53 is also known to increase the risk of breast cancer.

Find out more about breast cancer in families.

Screening for people at increased risk

The guidance recommends more screening for people who’ve had breast cancer and remain at high risk including:

  • annual mammograms for women aged 50–69 who have had breast cancer and who remain at high risk of breast cancer (including those who have a BRCA1 or BRCA2 mutation but not TP53)
  • annual MRI scans for women aged 30–49 who have had breast cancer and who remain at high risk of breast cancer.

The guidance also recommends more screening for people who haven’t had breast cancer but are at increased risk.

Preventive drugs for people at high risk of breast cancer

For the first time the guidance recommends the use of drugs to help prevent breast cancer in women at high risk. This includes offering:

  • tamoxifen for five years to pre-menopausal women at high risk of breast cancer
  • tamoxifen or raloxifene for five years to post-menopausal women at high risk of breast cancer.

These drugs should also be considered in women with a moderate risk of breast cancer.

Tamoxifen is currently prescribed as a treatment for breast cancer. Find out more about tamoxifen including its side effects.

What other options are available to women at high risk?

Women at high risk of developing breast cancer including those who’ve already had breast cancer and are still at high risk should be given the opportunity to discuss risk-reducing surgery. This includes surgery to remove both breasts (bilateral mastectomy) and both ovaries (bilateral salpingo-oophorectomy).

There’s evidence that having a bilateral mastectomy can significantly reduce the risk of developing breast cancer by 90–95% but it cannot completely eliminate the risk.

Removal of the ovaries can reduce the risk of breast cancer by up to 50%.

The guidance recommends that anyone considering a risk-reducing mastectomy should be given the opportunity to discuss reconstruction options.

The decision to have risk-reducing surgery regular screening or take preventive drugs is a complex one depending on your personal circumstances and it can take time to decide.

Find out more about risk-reducing surgery.

Genetic testing

Genetic testing through the NHS is only available through a regional genetic centre and following genetic counselling. Only a few people will be offered genetic testing and even if it’s an option some people choose not to be tested.

Usually the first stage of genetic testing is to take blood from a family member who has been diagnosed with breast or ovarian cancer to check for a known faulty gene.

The revised guidance recommends that people with a certain risk of carrying a faulty gene can be tested even if an affected relative is not available for testing.

Find out more about family history assessment and genetic testing.

Where to find more information

You can find out more information about breast cancer in families and risk of breast cancer on our website.

If you’re concerned about any aspect of breast cancer then you can call our free Helpline on 0808 800 6000.

You can also read the guidance in full on the NICE website.

Read Breast Cancer Care's comment on the updated NICE guidance.