Guidance

The surveillance of women at very high risk of developing breast cancer

Published 10 July 2025

Applies to England

The national cancer strategy requires the NHS breast screening programme (BSP) to manage the surveillance of women at very high risk of developing breast cancer to national standards across England.

This guidance is aimed at BSP providers, commissioners, organisations and individuals who refer women into the very high-risk programme. These organisations include genetics services, oncology services and the breast screening after radiotherapy dataset (BARD).

Women at very high risk eligible for screening in the NHS BSP are a subset of the high-risk group defined by the National Institute for Health and Care Excellence (NICE).

The NHS BSP screens very high risk women with digital X-ray mammography and/or magnetic resonance imaging (MRI) according to the frequencies published in the  Eligibility criteria and screening protocols for women at VHR of breast cancer.

The national breast screening system (NBSS) manages the invitation process and records all outcomes for women screened through the very high risk programme. Breast screening services should not use NBSS for the management of family history women identified to be outside the NHS BSP very high risk programme.

This revised guidance is applicable to all new referrals of women at very high risk (VHR) of breast cancer from April 2025. Women already participating in the VHR programme prior to this date can continue to be screened on their existing protocols.

1. Revisions to previous guidance

This guidance has been revised in the following ways:

• Eligibility criteria for women with a proven likely pathogenic/pathogenic variant in BRCA1, BRCA2 and PALB2 has changed to allow screening from the age of 25 years and upwards without additional CanRisk confirmation
• Eligibility for women with proven CHEK2 biallelic likely pathogenic/pathogenic variants
• AT homozygotes has been renamed ATM biallelic
• Women who are risk equivalent but a genetic cause has not been identified are eligible for VHR screening provided they meet the required CanRisk assessment as specified in the Eligibility criteria and screening protocols for women at VHR of breast cancer
• The format of referral forms is now  an electronic pdf generated from the National Inherited Cancer Predisposition Register (NICPR) sent by clinical genetics services directly to breast screening services. Radiotherapy referrals and referrals  by treating clinicians or oncology centres will continue using the national referral form which can be accessed online.

2. Accessing very high risk screening

Referrals into the NHS BSP should be through:

• a genetics service by a consultant clinical geneticist, genetic counsellor or an appropriately trained individual nominated by them
• the treating clinician (surgeon or oncologist) - for cancer patients found to carry a genetic mutation that meets the eligibility criteria for very high risk screening
• BARD - for women who received radiotherapy to sites involving breast tissue during treatment for lymphoma and non-lymphomas (where appropriate)

Oncologists wishing to refer women who received radiotherapy to sites involving breast tissue for cancers other than lymphoma, are advised to complete a BARD non-lymphoma patient referral-form and send to BARD on chn-tr.bard@nhs.net to confirm eligibility for very high risk screening, and subsequent referral if appropriate.

Referrers should make sure that all women referred meet the criteria for very high risk screening within the NHS BSP and include all required evidence.

2.1 Referrals by clinical genetics services

Women who meet the very high risk criteria should be referred to their local breast screening service. This includes women who are considering risk-reducing surgery.

Referral is via an electronic pdf generated from the National Inherited Cancer Predisposition Register (NICPR) database.  The pdf referral form should be sent to a nominated generic email address for the appropriate breast screening service. The breast screening service must make sure that this inbox is accessible to more than one person and is monitored daily.

On receipt, each referral must be transferred to the named high risk coordinators or director of breast screening without delay. In the rare occurrence Where women fulfil more than one risk criteria for very high risk screening (for example, BRCA1 likely pathogenic variant and previous radiotherapy to breast tissue when aged 15), their screening protocol should be determined  on a case by case basis and reviewed by a consultant radiologist, consultant practitioner or breast clinician.

Some women may be referred for VHR screening on more than one occasion.  This could happen if they are deemed risk equivalent but at a later date undergo testing for a genetic mutation and are found to be positive.  This further referral would be received by the breast screening service and would change their screening protocol.

A regular reconciliation audit will be undertaken nationally  to ensure that all eligible women referred from clinical genetics services from the NICPR database have been received and invited by the VHR programme.

Once a referral has been received, the woman needs to be appropriately identified as very high risk on Breast Screening Select (BSS) and the National Breast Screening System (NBSS). Documentation should be scanned and uploaded to the woman’s BSS record. See more detailed information regarding these processes in Guidance for organising a VHR screening programme.

2.2 Referrals by treating clinicians or oncology centres

Women who meet the very high risk criteria should be referred to their local breast screening service. This includes women who are considering risk-reducing surgery.

Referral is via the national referral form which can be accessed online. Once completed, this should be sent to the appropriate BSO for invitation and eligibility authorised by a consultant radiologist, consultant practitioner or breast clinician.

2.3 Referrals by BARD

BARD identifies all women in England below the age of 36 who have been treated with radiotherapy for lymphoma to sites involving breast tissue. This occasionally may include some non-lymphoma referrals where BARD have confirmed appropriate eligibility.

Women in this group who were treated with radiotherapy between the ages of 10 and 35 years are referred into the NHS BSP very high risk programme.

Women are identified from cancer registries and then cross matched against information held at radiotherapy treatment centres and with data from the radiotherapy dataset (RTDS) to determine eligibility for inclusion in the NHS BSP for very high risk screening by BARD. If eligibility is confirmed, a referral form is sent to the appropriate breast screening service.  If the woman is below age of eligibility for VHR screening, her details are retained on BSS for invitation at an appropriate age.

The service must include the BARD patient information leaflet with the invitation. This is sent to the service from BARD directly with the referral or is available online.

The service must subsequently confirm with BARD:

• that the referred woman has been registered onto BSS (on the pending list if referred before her protocol screening age) or both BSS and NBSS if she is due screening now
• if and when the referred woman attended screening, using the national referral form

3. Threshold for screening women in the very high risk programme

The NHS BSP screens women at very high risk of breast cancer due to:

• a proven germline likely pathogenic/pathogenic variant in BRCA1, BRCA2, TP53, PALB2, PTEN, STK11 or CDH1 or any other high risk gene based on testing in a clinically accredited laboratory
• A confirmed ATM c.7271T>G carrier
• A confirmed biallelic ATM carrier (has Ataxia Telangiectasisa)
• A confirmed biallelic CHEK2 carrier
• determined to be at equivalent risk with a proven clinically actionable variant in ATM, CHEK2, RAD51C, RAD51D
• determined to be equivalent risk for an untested familial variant
• determined to be at an equivalent risk for an unidentified genetic cause
• having received radiotherapy to breast tissue during treatment for Hodgkin and non-Hodgkin lymphoma

The NICE familial breast cancer guidelines categorise women at increased risk of breast cancer into moderate or high risk categories.

Only a subset of those defined by NICE as being at high risk reach the very high risk group threshold used in the NHS BSP. This has previously been set at women with genes proven to have a lifetime risk of 40% or greater and for other women who have a specific likely pathogenic/pathogenic  variant in another gene which meets defined 10 year risk as specified in  Eligibility criteria and screening protocols for women at VHR of breast cancer.

3.1 Who is eligible for very high risk screening

Women eligible for the very high risk screening programme can be sub-divided into the following five groups;

• confirmed gene carriers,
• equivalent risk for an untested familial variant or
• equivalent risk for an unidentified genetic cause
• those receiving radiotherapy to breast tissue during treatment for Hodgkin and non-Hodgkin lymphoma between the ages of 10 and under 36 years
• a small number of women who received radiotherapy to breast tissue during treatment for cancers other than lymphoma

An NHS endorsed computer risk modelling software programme, such as BOADICEA (CanRisk) or Tyrer Cuzick should be used to confirm that the threshold for eligibility has been met where evidence of 10 year risk is required. Where applicable the clinical genetics service must verify that the eligibility for very high risk screening are reached and retain evidence of the assessment in the clinical records.

When a woman with a proven germline likely pathogenic/ pathogenic variant reaches 71 years of age, routine invitations for very high risk screening will stop. At this stage she is entitled to self-refer for screening. For women in the very high risk programme, this will be annual screening in accordance with her VHR screening protocol. At this point, if her breast density score is not BI-RADS A, screening should continue to include MRI and mammography and be subject to annual review.

Eligible women over the age of 70 should be informed that they need to contact their local screening service each year to arrange annual screening.

Information on the Eligibility criteria and screening protocols for women at VHR of breast cancer, is available here.

3.2 Equivalent risk for an untested familial variant

Some women may choose not to have genetic testing In this case, Information on the Eligibility criteria and screening protocols for women at VHR of breast cancer, is available here.

Where applicable, risk assessment should be completed by the NHS clinical genetics service with an NHS endorsed computer risk modelling software programme, such as BOADICEA (CanRisk) or Tyrer Cuzick. The clinical genetics service must verify that the eligibility for very high risk screening are reached and retain evidence of the assessment in the clinical records.

 If a woman has not been tested but has a first degree relative with a germline BRCA1, BRCA2, or PALB2 likely pathogenic/pathogenic variant, she has a 50% chance of carrying this variant. After the age of 50 a previously untested woman will be returned to the routine screening programme unless she has subsequently been tested and is shown to carry the familial variant. The residual lifetime risk associated with a likely pathogenic/pathogenic variant will have reduced by this time. A woman with only a 50% chance of carrying this pathogenic variant would no longer reach the risk threshold to access very high risk screening.

3.3 Equivalent risk for an unidentified genetic cause

Rarely, due to a very strong family history of breast cancer, some women may have a breast cancer risk assessed as equivalent to very high risk, but a monogenic cause has not been identified in the family. Risk assessment should be completed by the NHS clinical genetics service with an NHS endorsed computer risk modelling software programme, such as BOADICEA (CanRisk) or Tyrer Cuzick.

Where applicable the clinical genetics service must verify that the eligibility for very high risk screening are reached and retain evidence of the assessment in the clinical records.

Information on the Eligibility criteria and screening protocols for women at VHR of breast cancer, is available here.

3.4 Women previously treated with total body irradiation

Women who have previously received total body irradiation (TBI) are at an elevated risk of breast cancer in the years following treatment. NHS England will review the evidence to determine if previous TBI reaches the eligibility threshold for the VHR screening programme.

Information on the Eligibility criteria and screening protocols for women at VHR of breast cancer is available here.

3.5 Queries over entitlement following previous radiotherapy

Most women who have had radiotherapy fields involving breast tissue at a young age are those receiving treatment for Hodgkin or non-Hodgkin lymphoma. However, other diagnoses may also result in similar radiotherapy treatment fields.

If a woman had radiotherapy involving breast tissue below the age of 36 years but it is unclear if she is eligible for very high risk screening within the NHS BSP, contact BARD for advice on chn-tr.bard@nhs.net.

4. Screening test

The screening test should be as indicated in the  Eligibility criteria and screening protocols for women at VHR of breast cancer, depending upon a woman’s current age and referral reason. Where MRI is stated, but cannot be tolerated, or is contra-indicated, she and the lead radiologist should discuss and agree potential alternatives such as wide scanners.

Breast ultrasound is not routinely provided by the NHS BSP as a screening tool. If a woman cannot be screened with MRI, a unit may elect to perform ultrasound screening for an individual. This should only be carried out following a full discussion and documentation regarding the potential benefits and limitations of the test.

This is supported by NICE guidance, which states:

• do not routinely offer ultrasound surveillance to women at moderate or high risk of breast cancer but consider it:
  • when MRI surveillance would normally be offered but is not suitable (for example, because of claustrophobia)
  • when results of mammography or MRI are difficult to interpret

4.1 Process before MRI screening

Local protocols should be followed regarding MRI with gadolinium enhancement. There is  also Royal College of Radiologists guidance on gadolinium based contrast agent administration to adult patients. If a woman cannot tolerate gadolinium or refuses to have MRI with a contrast agent, MRI should not be performed. Depending on the woman’s age and breast density, other modalities such as mammography may be offered. This decision must be made and documented by clinicians locally.

4.2 Review of background density

Some of the screening protocols in the  Eligibility criteria and screening protocols for women at VHR of breast cancer state that women aged 50 or over require mammography with or without an MRI. The decision for MRI is based on an annual review of breast density.

Women covered by this guidance should have both procedures up to and including the age of 50. At the screen when the woman is aged between 50 and before her 51st birthday, breast density should be reviewed by the reporting image reader at the time of her breast screening. If the mammogram shows an entirely fatty breast (BI-RADS A, see the BI-RADS Atlas - Reporting System), MRI is unlikely to add value and her screening protocol should change to mammography only for the remainder of her screening invitations. The review is undertaken by one image reader and the outcome recorded on NBSS. The breast density measurement can also be reported using an automated tool which can measure density giving a BI-RADS score. If there is uncertainty over the category of breast density, a further image reader should be consulted.

If a decision is made that a woman no longer needs MRI due to a breast density classification of BI-RADS A, her protocol should be updated within the client record on NBSS to show mammography only is required for her subsequent screening appointments and a letter should be sent to the woman and her GP informing them of this change to her screening protocol. More detailed information regarding this process is available in Guidance for organising a VHR screening programme. If on review her breast density BI-RADS classification is B to D, no change to her protocol is required.

The woman’s breast density is likely to reduce over time. If the initial breast density review indicated that the woman should continue to have MRI and mammography, images should be reviewed annually when a woman is screened (at the time of screening) up to her 71st birthday (or beyond on an annual basis if she opts to self-refer for screening). She should remain on an MRI plus mammography protocol until a clinical decision is made that MRI is no longer required. Annual reviews of breast density are no longer required once a woman has been changed to a mammography only protocol.

Where women move between services, the receiving service should contact the previous service to determine the outcome of the density review and set her protocol on NBSS accordingly.

Any women who are newly referred into the VHR programme after the age of 50 years  (including those newly identified and referred over the age of 70 years), must have both MRI and mammography performed at the initial screen and a breast density review undertaken at this point to assess whether MRI is required at subsequent screens. If breast density is not initially classified as BI-RADS A, annual review should take place thereafter.

4.3 Baseline MRIs for women considering risk-reducing surgery

A woman newly referred into the programme and meeting the very high risk criteria is entitled to MRI screening in accordance with her protocol, even if she is considering risk-reducing surgery. This may help identify malignancy before surgery.

After risk-reducing surgery, a woman can either opt out of the programme by signing a form or the service can cease the woman if there is clinical evidence that bilateral mastectomy has been carried out. Details are available in the Guidance on opting out (cease) from breast screening, which include copies of the required form.

5. Policy for short-term recalls following screening assessment

Short-term recalls (STR) are defined as a further appointment to attend a screening assessment indicated before the normal screening interval (one year).

All women on short-term recall should have previously attended assessment. Short-term recall should not be used as a routine outcome following assessment. Every effort should be made to obtain a definitive diagnosis at initial assessment. Short-term recall should only be made in exceptional circumstances and with fully informed consent as it is associated with significant anxiety.

If recall is within 6 weeks of the original assessment then it must be part of the same episode. If recall is after 6 weeks, it must be logged on NBSS as a short-term recall (STR) episode. The default period for VHR short-term recalls is 3 months following assessment. No more than 6 months should elapse between previous screening assessment appointments and the STR episode.  Following the STR appointment, the next test due date (NTDD) should be reset as described in the Guidance for organising a VHR screening programme.

6. Screening women in pregnancy and lactation

Screening with mammography can be safely performed during pregnancy but as mammographic density increases during pregnancy and lactation, its effectiveness is reduced. Women can be screened during lactation but are advised to breastfeed or express milk prior to the examination. Shielding is not considered necessary due to the low radiation dose of mammography. See Guidance on using shielding on patients for diagnostic radiology applications.

MRI during pregnancy is not recommended due to the high level of background parenchymal enhancement during pregnancy and lactation. However, each woman should be reviewed and Royal College of Radiologists (RCR) Guidance on screening and symptomatic breast imaging covering surveillance in pregnancy and lactation should be followed.

If women opt to postpone screening due to pregnancy or lactation, MRI screening should resume 3 months both postpartum and following cessation of lactation.

7. Screening transgender people

Transgender (trans) men and non-binary people who have breast tissue and fulfil the criteria to be eligible for very high risk screening will be invited for screening if they are registered with a GP with a gender marker of female or indeterminate. If they are registered with a gender marker of male, they will not be automatically invited. They will need to speak to their GP who can arrange for a referral to a local hospital for the appropriate imaging on an annual basis.

People identifying as trans women who have breast tissue and are registered as a female and who are eligible for very high risk screening will be invited for screening. For more information, see NHS population screening: information for trans and non-binary people.

8. Related guidance

Technical guidelines on the use of MRI for the surveillance of women at higher risk must be followed. This includes information relating to physics quality control and guidance for radiologists reporting MRI.

There is Guidance for organising a VHR screening programme available online.

Information on eligibility for VHR screening is available in Eligibility criteria and screening protocols for women at VHR of breast cancer