Familial breast cancer

Short Text

The classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care.

Introduction

This pathway covers breast cancer risk assessment and referral.
Breast cancer is the most common cancer in women. Most women with breast cancer do not have a family history of the disease, but it can be hereditary. In men breast cancer is rare.

Source guidance

The NICE guidance that was used to create the pathway.
Familial breast cancer: the classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care (partial update of NICE clinical guideline 14). NICE clinical guideline 41 (2006)

Quality standards

Breast cancer quality standard

These quality statements are taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.
1Referral
2Clinical assessment
3Breast conserving surgery
4Mastectomy
5Pathology – ER and HER2 status
6Management
7Staging
8Adjuvant therapy planning
9Clinical follow-up
10Follow-up imaging
11Multidisciplinary team
12Key worker
13Brain metastases

Quality statements

Referral

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People presenting with symptoms that suggest breast cancer are referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that people presenting with symptoms that suggest breast cancer are referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.
Process
Proportion of people presenting with symptoms that suggest breast cancer who are referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.
Numerator – the number of people in the denominator referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.
Denominator – the number of people presenting with symptoms that suggest breast cancer.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for people presenting with symptoms that suggest breast cancer to be referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.
Healthcare professionals ensure they are aware of local referral pathways for breast cancer to ensure that people with symptoms that suggest breast cancer are referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.
Commissioners ensure they commission services that make sure people presenting with symptoms that suggest breast cancer are referred to a unit that performs diagnostic procedures in accordance with NHS Breast Screening Programme guidance.
People in whom breast cancer is suspected are referred to a unit that carries out diagnosis in accordance with NHS Breast Screening Programme guidance.

Source clinical guideline references

NICE clinical guideline 27, recommendation 1.6.1
Breakthrough Breast Cancer (2011) Best practice diagnostic guidelines for patients presenting with breast symptoms.
NHS Breast Screening Programme (2010) Clinical Guidelines for Breast Cancer Screening Assessment (third edition).

Data source

Structure
Manual for cancer services: breast measures (National Cancer Peer Review Programme). Available from www.cquins.nhs.uk
Process
Manual for cancer services: breast measures (National Cancer Peer Review Programme). Available from www.cquins.nhs.uk

Definitions

The NHS Breast Screening Programme implements the Best Practice Diagnostic Guidelines for Patients Presenting with Breast Symptoms (2011), which are endorsed as current policy by the Department of Health. Diagnostic procedures are performed in accordance with the Clinical Guidelines for Breast Cancer Screening Assessment Third Edition (2010), which contain diagnostic algorithms for assessment of symptomatic patients

Clinical assessment

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with early invasive breast cancer are offered a pre-treatment ultrasound evaluation of the axilla and, if abnormal lymph nodes are identified, ultrasound-guided needle biopsy (fine needle aspiration or core). Those with no evidence of lymph node involvement on needle biopsy are offered sentinel lymph node biopsy when axillary surgery is performed.

Quality measure

Structure
a) Evidence of local arrangements, including written clinical protocols, to ensure that people with early invasive breast cancer are offered a pre-treatment ultrasound of the axilla and, if abnormal lymph nodes are identified, ultrasound-guided needle biopsy (fine needle aspiration [FNA] or core).
b) Evidence of local arrangements including written clinical protocols to ensure that people with early invasive breast cancer and no evidence of lymph node involvement are offered sentinel lymph node biopsy when axillary surgery is performed.
Process
a) Proportion of people with early invasive breast cancer who receive a pre-treatment ultrasound evaluation of the axilla.
Numerator – the number of people in the denominator receiving a pre-treatment ultrasound evaluation of the axilla.
Denominator – the number of people with early invasive breast cancer.
b) Proportion of people with early invasive breast cancer who receive a pre-treatment ultrasound that identifies abnormal lymph nodes who receive an ultrasound-guided needle biopsy (FNA or core).
Numerator – the number of people in the denominator receiving an ultrasound needle biopsy (FNA or core).
Denominator – the number of people with early invasive breast cancer who receive a pre-treatment ultrasound that identifies abnormal lymph nodes.
c) Proportion of people with early invasive breast cancer and no pre-treatment ultrasound evidence of lymph node involvement who receive sentinel lymph node biopsy.
Numerator – the number of people in the denominator receiving sentinel lymph node biopsy.
Denominator – the number of people with early invasive breast cancer and no pre-treatment ultrasound evidence of lymph node involvement.
Outcome
Re-operation rates for axillary surgery.
Numerator – the number of patients in the denominator receiving more than one axillary operation to remove ipsilateral axillary lymph nodes.
Denominator – the number of patients with node-positive early invasive breast cancer who receive an axillary operation.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for people with early invasive breast cancer to be offered a pre-treatment ultrasound evaluation of the axilla and, if abnormal lymph nodes are identified, ultrasound-guided needle biopsy (FNA or core). In addition, ensure systems are in place for those with no evidence of lymph node involvement to be offered sentinel lymph node biopsy when axillary surgery is performed.
Healthcare professionals ensure that people with early invasive breast cancer are offered a pre-treatment ultrasound evaluation of the axilla and, if abnormal lymph nodes are identified, ultrasound-guided needle biopsy (FNA or core). Ensure that those with no evidence of lymph node involvement are offered sentinel lymph node biopsy when axillary surgery is performed.
Commissioners ensure they commission services that provide pre-treatment ultrasound evaluation of the axilla for people with early invasive breast cancer and, if abnormal lymph nodes are identified, ultrasound-guided needle biopsy (FNA or core). Ensure services offer sentinel lymph node biopsy to those with no evidence of lymph node involvement when axillary surgery is performed.
People with early invasive breast cancer are offered an ultrasound scan of the armpit (axilla) before cancer treatment starts, to look for possible spread of the cancer to the lymph nodes. If abnormal lymph nodes are found, people are offered an ultrasound-guided needle biopsy to take a tissue sample from a lymph node. If there is no evidence of abnormal lymph nodes, people are offered another test called sentinel lymph node biopsy, which is performed during surgery for the cancer.

Source clinical guideline references

NICE clinical guideline 80, recommendations 1.1.3 and 1.4.1 (key priorities for implementation).

Data source

Structure
a) and b) Local data collection.
Process
a), b) and c) The Association of Breast Surgery (ABS) Breast Screening Audit. Available from www.cancerscreening.nhs.uk and National Cancer Dataset and Cancer Outcomes and Services Dataset (in development). Available from www.ic.nhs.uk Also contained within NICE clinical guideline 80 audit support, criteria 1 and 2. Available from www.nice.org.uk/guidance/CG80
Outcome
Local data collection.

Breast conserving surgery

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with early breast cancer undergoing breast conserving surgery, which may include the use of oncoplastic techniques, have an operation that both minimises local recurrence and achieves a good aesthetic outcome.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that people with early breast cancer undergoing breast conserving surgery, which may include the use of oncoplastic techniques, have an operation that both minimises local recurrence and achieves a good aesthetic outcome.
Process
Proportion of people with early breast cancer who undergo breast conserving surgery.
Numerator – the number of people in the denominator who have breast conserving surgery.
Denominator – the number of people with early breast cancer having surgery.
Outcome
a) Mastectomy rates.
b) Re-operation rates after first breast conserving surgery.
c) Breast cancer local recurrence rate.
Numerator – the number of people in the denominator who have a local recurrence.
Denominator – the number of people with early breast cancer who have had breast conserving surgery.
d) Patient satisfaction with outcome of breast surgery.
Numerator – the number of people in the denominator who report satisfaction with the aesthetic outcome of breast conserving surgery.
Denominator – the number of people early breast cancer who have had breast conserving surgery.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for people with early breast cancer who undergo breast conserving surgery, which may include oncoplastic techniques, to have an operation that both minimises local recurrence and achieves a good aesthetic outcome.
Healthcare professionals ensure people with early breast cancer who undergo breast conserving surgery, which may include oncoplastic techniques, have an operation that both minimises local recurrence and achieves a good aesthetic outcome. They should also record local recurrences.
Commissioners ensure they commission services that provide operations, including oncoplastic techniques, that both minimise local recurrence and achieve a good aesthetic outcome.
People with early breast cancer who have an operation to remove just the tumour and a small amount of breast tissue around it (breast conserving surgery), which may include techniques to improve appearance, have an operation that minimises the risk that the cancer will come back, as well as giving a good cosmetic appearance.

Source clinical guideline references

NICE clinical guideline 80, recommendation 1.5.1 (key priority for implementation).

Data source

Structure
Local data collection.
Process
National Mastectomy and Breast Reconstruction (MBR) Audit. Previous figures are available from www.ic.nhs.uk. This data collection ended in March 2011.
Outcome
a) and c) National Mastectomy and Breast Reconstruction (MBR) Audit. Previous figures are available from www.ic.nhs.uk. This data collection ended in March 2011.
b) and d) Local data collection.

Definitions

Breast conserving surgery may include wide excision and partial reconstruction.

Mastectomy

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with early breast cancer who are to undergo mastectomy have the options of immediate and planned delayed breast reconstruction discussed with them.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that people with early breast cancer who are to undergo mastectomy have the options of immediate and planned delayed breast reconstruction discussed with them.
Process
a) Proportion of people with early breast cancer having mastectomy who have an immediate or planned delayed breast reconstruction.
Numerator – the number of people in the denominator who have an immediate or planned delayed breast reconstruction.
Denominator – the number of people with early breast cancer having mastectomy.
b) Proportion of people with early breast cancer who are to undergo mastectomy who have the options of immediate or planned delayed breast reconstruction discussed with them.
Numerator – the number of people in the denominator who have the options of immediate or planned delayed breast reconstruction discussed with them.
Denominator – the number of people with early breast cancer who are to undergo mastectomy.
Outcome
Patient satisfaction with discussion about breast surgery options.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for people with early breast cancer who are to undergo mastectomy to have the options of immediate and planned delayed breast reconstruction discussed with them.
Healthcare professionals ensure they discuss the options of immediate and planned delayed breast reconstruction with people with early breast cancer who are to undergo mastectomy.
Commissioners ensure they commission services in which the options of immediate and planned delayed breast reconstruction are discussed with people with early breast cancer who are to undergo mastectomy.
People with early breast cancer who are to undergo mastectomy (an operation to remove the whole breast) have the options of immediate and planned delayed breast reconstruction discussed with them.

Source clinical guidelines

NICE clinical guideline 80, recommendation 1.5.1 (key priority for implementation).

Data source

Structure
Local data collection
Process
a) National Mastectomy and Breast Reconstruction (MBR) Audit. Previous figures are available from www.ic.nhs.uk. This data collection ended in March 2011.
b) Local data collection. Contained within NICE clinical guideline 80 audit support, criterion 3. Available from www.nice.org.uk/guidance/CG80
Outcome
Local data collection

Definitions

All appropriate breast reconstruction options should be offered and discussed with people, irrespective of whether they are all available locally.
People with early breast cancer who are to undergo mastectomy should have an operation that minimises local recurrence and achieves a good aesthetic outcome.

Pathology – ER and HER2 status

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with newly diagnosed invasive breast cancer and those with recurrent disease (if clinically appropriate) have the ER and HER2 status of the tumour assessed and the results made available within 2 weeks to allow planning of systemic treatment by the multidisciplinary team.

Quality measure

Structure
a) Evidence of local arrangements and written clinical protocols to ensure that people with newly diagnosed invasive breast cancer have the oestrogen receptor (ER) and human epidermal growth receptor 2 (HER2) status of the tumour assessed.
b) Evidence of local arrangements and written clinical protocols to ensure that people with recurrent disease have the ER and HER2 status of the tumour assessed if clinically appropriate.
c) Evidence of local arrangements and written clinical protocols to ensure ER and HER2 status results are available within 2 weeks to allow planning of systemic treatment by the multidisciplinary team.
Process
a) Proportion of people with newly diagnosed invasive breast cancer who have the ER status of the tumour assessed.
Numerator – the number of people in the denominator who have the ER status of the tumour assessed.
Denominator – the number of people with newly diagnosed invasive breast cancer.
b) Proportion of people with newly diagnosed invasive breast cancer who have the HER2 status of the tumour assessed.
Numerator – the number of people in the denominator who have the HER2 status of the tumour assessed.
Denominator – the number of people with newly diagnosed invasive breast cancer.
c) Proportion of people with histologically confirmed recurrent breast cancer who have the ER status of the tumour assessed, if clinically appropriate.
Numerator – the number of people in the denominator who have the ER status of the tumour assessed, if clinically appropriate.
Denominator – the number of people with histologically confirmed recurrent breast cancer.
d) Proportion of people with histologically confirmed recurrent breast cancer who have the HER2 status of the tumour assessed, if clinically appropriate.
Numerator – the number of people in the denominator who have the HER2 status of the tumour assessed, if clinically appropriate.
Denominator – the number of people with histologically confirmed recurrent breast cancer.
e) Proportion of people with newly diagnosed invasive breast cancer or recurrent disease who have ER status results available within 2 weeks.
Numerator – the number of people in the denominator who have ER status results available within 2 weeks.
Denominator – the number of people with newly diagnosed invasive breast cancer or recurrent disease.
f) Proportion of people with newly diagnosed invasive breast cancer or recurrent disease who have HER2 status results available within 2 weeks.
Numerator – the number of people in the denominator who have HER2 status results available within 2 weeks.
Denominator – the number of people with newly diagnosed invasive breast cancer or recurrent disease.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for people with newly diagnosed invasive breast cancer and those with recurrent disease (if clinically appropriate) to have the ER and HER2 status of the tumour assessed and for results to be available within 2 weeks.
Healthcare professionals ensure people with newly diagnosed invasive breast cancer and those with recurrent disease (if clinically appropriate) have the ER and HER2 status of the tumour assessed and results are available within 2 weeks.
Commissioners ensure they commission services that assess ER and HER2 status of the tumour for people with newly diagnosed invasive breast cancer and those with recurrent disease (if clinically appropriate) and ensure results are available within 2 weeks.
People with newly diagnosed invasive breast cancer and, if appropriate, those with breast cancer that has come back or spread have tissue from their tumour tested to find out its 'oestrogen receptor' (ER) and 'human epidermal growth receptor 2' (HER2) status. The test results are available within 2 weeks to help plan further treatment.

Source clinical guideline references

NICE clinical guideline 81, recommendation 1.1.8 (key priority for implementation) and NICE clinical guideline 80, recommendations 1.6.1, 1.6.3 and 1.6.4.

Data source

Structure
a), b) and c) Local data collection.
Process
a), b), c), d), e) and f) Local data collection.

Definitions

ER and HER2 status should be assessed on recurrent disease if not assessed at the time of initial diagnosis (ER will usually have been assessed at the time of initial diagnosis, unless the original diagnosis was made several years ago before testing for ER or HER2 was routine) or if it is felt the biology of the tumour may have changed.

Management

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with early invasive breast cancer, irrespective of age, are offered surgery, radiotherapy and appropriate systemic therapy, unless significant comorbidity precludes it.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that people with early invasive breast cancer, irrespective of age, are offered surgery, radiotherapy and appropriate systemic therapy, unless significant comorbidity precludes it.
Process
a) Proportion of people older than 70 with early invasive breast cancer who receive breast conserving surgery.
Numerator – the number of people in the denominator who receive breast conserving surgery.
Denominator – the number of people older than 70 with early invasive breast cancer.
b) Proportion of people aged 70 and under with early invasive breast cancer who receive breast conserving surgery.
Numerator – the number of people in the denominator who receive breast conserving surgery.
Denominator – the number of people aged 70 and under with early invasive breast cancer.
c) Proportion of people older than 70 with early invasive breast cancer who receive radiotherapy after breast conserving surgery.
Numerator – the number of people in the denominator who receive radiotherapy after breast conserving surgery.
Denominator – the number of people older than 70 with early invasive breast cancer who have breast conserving surgery.
d) Proportion of people aged 70 and under with early invasive breast cancer who receive radiotherapy after breast conserving surgery.
Numerator – the number of people in the denominator who receive radiotherapy after breast conserving surgery.
Denominator – the number of people aged 70 and under with early invasive breast cancer who have breast conserving surgery.
e) Proportion of people older than 70 with early invasive breast cancer that is oestrogen-receptor (ER) positive who receive endocrine therapy.
Numerator – the number of people in the denominator who receive endocrine therapy.
Denominator – the number of people older than 70 with early invasive breast cancer that is ER-positive.
f) Proportion of people aged 70 and under with early invasive breast cancer that is ER-positive who receive endocrine therapy.
Numerator – the number of people in the denominator who receive endocrine therapy.
Denominator – the number of people aged 70 and under with early invasive breast cancer that is ER-positive.
g) Proportion of people older than 70 with early invasive breast cancer that is hormone receptor-negative who receive chemotherapy.
Numerator – the number of people in the denominator who receive chemotherapy.
Denominator – the number of people older than 70 with early invasive breast cancer that is hormone receptor-negative.
h) Proportion of people aged 70 and under with early invasive breast cancer that is hormone receptor-negative who receive chemotherapy.
Numerator – the number of people in the denominator who receive chemotherapy.
Denominator – the number of people aged 70 and under with early invasive breast cancer that is hormone receptor-negative.

Description of what the quality statement means for each audience

Service providers ensure systems and written clinical protocols are in place so that people with early invasive breast cancer, irrespective of age, are offered surgery, radiotherapy and appropriate systemic therapy, unless significant comorbidity precludes it.
Healthcare professionals ensure that people with early invasive breast cancer, irrespective of age, are offered surgery, radiotherapy and appropriate systemic therapy, unless significant comorbidity precludes it.
Commissioners ensure they commission services that offer people with early invasive breast cancer, irrespective of age, surgery, radiotherapy and appropriate systemic therapy, unless significant comorbidity precludes it.
People with early invasive breast cancer, whatever their age, are offered surgery, radiotherapy and other appropriate treatments, unless other illnesses or conditions mean it is unsuitable.

Source clinical guideline references

NICE clinical guideline 80, recommendation 1.12.1 (key priority for implementation).

Data source

Structure Local data collection.
Process
a), b) West Midlands Cancer Intelligence Unit (2007) Breast Cancer Clinical Outcome Measures (BCCOM) Project. Outcome measure 5: number and proportion of breast cancers treated surgically. Available from www.wmpho.org.uk.
c), d), e), f), g) and h) Local data collection.

Definitions

People should receive an age-independent assessment of comorbidity that includes performance status to determine the presence of significant comorbidity.
Comprehensive geriatric assessment, where a key feature is the ability to function independently without additional support, can be very valuable in deciding whether the patient can cope with adjuvant treatments.

Equality and diversity considerations

Breast cancer treatment should be based on clinical need and fitness for treatment rather than age. Treatment and care of all patients with early invasive breast cancer should take into account patients' needs and preferences.

Staging

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with early invasive breast cancer do not undergo staging investigations for distant metastatic disease in the absence of symptoms.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that people with early invasive breast cancer do not undergo staging investigations for distant metastatic disease in the absence of symptoms.
Process
Proportion of people with early invasive breast cancer who do not undergo staging investigations for distant metastatic disease in the absence of symptoms.
Numerator – the number of people in the denominator who do not undergo staging investigations for distant metastatic disease.
Denominator – the number of people with early invasive breast cancer who have no symptoms suggestive of distant metastatic disease.

Description of what the quality statement means for each audience

Service providers ensure systems are in place so that people with early invasive breast cancer do not undergo staging investigations for distant metastatic disease in the absence of symptoms.
Healthcare professionals ensure that people with early invasive breast cancer do not undergo staging investigations for distant metastatic disease in the absence of symptoms.
Commissioners ensure they commission services in which people with early invasive breast cancer do not undergo staging investigations for distant metastatic disease in the absence of symptoms.
People with early invasive breast cancer do not undergo investigations for cancer elsewhere in the body if they have no symptoms that the cancer has spread.

Source clinical guideline references

Scottish Intercollegiate Guideline Network (SIGN) guideline 84, recommendation 2.3.2.

Data source

Structure
Local data collection
Process
Local data collection

Definitions

Staging is indicated for inflammatory, locally advanced or recurrent breast cancer.

Adjuvant therapy planning

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with early invasive breast cancer are involved in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.

Quality measure

Structure
Evidence of local arrangements to ensure systems are in place for people with early invasive breast cancer to be involved in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.
Process
Proportion of people with early invasive breast cancer who are involved in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.
Numerator – the number of people in the denominator who are involved in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.
Denominator – the number of people with early invasive breast cancer who have had surgery.
Outcome
Patient satisfaction with the decision-making process.

Description of what the quality statement means for each audience

Service providers ensure systems are in place to involve people with early invasive breast cancer in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.
Healthcare professionals ensure that people with early invasive breast cancer are involved in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.
Commissioners ensure they commission services that involve people with early invasive breast cancer in decisions about adjuvant therapy after surgery, which are based on an assessment of the prognostic and predictive factors, and the potential benefits and side effects.
People with early invasive breast cancer are involved in decisions about additional treatments after surgery. The decisions are made by reviewing the different factors that might affect the results of additional treatments, and the possible benefits and side effects.

Source clinical guideline references

NICE clinical guideline 80, recommendations 1.6.6 and 1.6.7.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
National Cancer Patient Experience Survey Programme 2010. Available from www.dh.gov.uk

Definitions

Discussions about adjuvant therapy after surgery may be supported by the use of appropriate models to support estimates of prognosis and the benefit of adjuvant treatment. These models include, but are not limited to:
  • Adjuvant! Online
  • Nottingham Prognostic Index
  • CancerMath
  • Predict

Clinical follow-up

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People having treatment for early breast cancer are offered personalised information and support, including a written follow-up care plan and details of how to contact a named healthcare professional.

Quality measure

Structure
a) Evidence of local arrangements and written clinical protocols to ensure that people having treatment for early breast cancer are offered personalised information and support, including a written follow-up care plan.
b) Evidence of local arrangements to ensure that people having treatment for early breast cancer are provided with details of how to contact a named healthcare professional.
Process
Proportion of people having treatment for early breast cancer who receive personalised information and support, including a written follow-up care plan and details of how to contact a named healthcare professional.
Numerator – the number of people in the denominator receiving personalised information and support, including a written follow-up care plan and details of how to contact a named healthcare professional.
Denominator – the number of people having treatment for early breast cancer.

Description of what the quality statement means for each audience

Service providers ensure systems are in place to offer people having treatment for early breast cancer personalised information and support, including a written follow-up care plan and details of how to contact a named healthcare professional.
Healthcare professionals ensure people having treatment for early breast cancer are offered personalised information and support, including a written follow-up care plan and details of how to contact a named healthcare professional.
Commissioners ensure they commission services that offer people having treatment for early breast cancer personalised information and support, including a written follow-up care plan and details of how to contact a named healthcare professional.
People having treatment for early breast cancer are offered personalised information and support, including a written plan for their care after treatment and details of how to contact a named healthcare professional.

Source clinical guideline references

NICE clinical guideline 80, recommendation 1.14.6 (key priority for implementation).

Data source

Structure
a) and b) Local data collection.
Process
Local data collection. Contained within NICE clinical guideline 80 audit support, criterion 8. Available from www.nice.org.uk/guidance/CG80

Definitions

This statement focuses on people with early breast cancer. People with recurrent and advanced disease are addressed in statements 11 and 12.
Personalised information and support should include:
  • details of named healthcare professionals and how to contact them
  • dates of any follow-up appointments and review of ongoing adjuvant therapy (including assessment of bone density)
  • details of surveillance mammography (frequency and duration)
  • explanations of types of recurrence (ongoing risk), signs and symptoms and how to report them
  • support in coping with the fear and anxiety of recurrence
  • explanations of the incidence and of interventions for possible effects of treatment, including menopausal symptoms, fatigue, lymphoedema, pain, sleep disruption, future pregnancy and bone health
  • information about the possible psychosocial impact of breast cancer, including anxiety, depression, altered body image, sexuality and relationships
  • practical information about diet, reducing body mass index (BMI) and exercise (lifestyle changes that may help to reduce the risk of recurrence and enhance recovery), finances and work, breast prostheses and travel insurance
  • signposting to further sources of information and support.

Equality and diversity considerations

All information about treatment and care should be personalised and tailored to the individual needs of the patient (refer to the 'Diversity, equality and language' section above).

Follow-up imaging

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

Women treated for early breast cancer have annual mammography for 5 years after treatment. After 5 years, women who are 50 or older receive breast screening according to the NHS Breast Screening Programme timescales, whereas women younger than 50 continue to have annual mammography until they enter the routine NHS Breast Screening Programme.

Quality measure

Structure
a) Evidence of local arrangements and written clinical protocols to ensure that women treated for early breast cancer have annual mammography for 5 years after treatment and then, if they are 50 or older, receive breast screening according to the NHS Breast Screening Programme timescales.
b) Evidence of local arrangements and written clinical protocols to ensure that women treated for early breast cancer have annual mammography until they are 50, when they enter the routine NHS Breast Screening Programme.
Process
a) Proportion of women treated for early breast cancer and 45 or older at the time the post-treatment surveillance started, who have had 5 years of annual mammography before entering the NHS Breast Screening Programme.
Numerator – the number of women in the denominator who have had annual mammography for 5 years before entering the NHS Breast Screening Programme.
Denominator – the number of women treated for early breast cancer who were 45 or older when post-treatment surveillance started.
b) Proportion of women treated for early breast cancer and younger than 45 when post-treatment surveillance started, who have had annual mammography until they entered the NHS Breast Screening Programme at the age of 50.
Numerator – the number of women in the denominator who have had annual mammography until they entered the NHS Breast Screening Programme at the age of 50.
Denominator – the number of women treated for early breast cancer who were under 45 when post-treatment surveillance started.
c) Proportion of women treated for early breast cancer who are within 5 years of finishing their treatment who have had a mammography within the previous year.
Numerator – the number of women in the denominator who have had a mammography within the previous year.
Denominator – the number of women treated for early breast cancer who are within 5 years of finishing their treatment.

Description of what the quality statement means for each audience

Service providers ensure systems and processes are in place so that women treated for early breast cancer have annual mammography for 5 years after treatment; and that after 5 years women who are 50 or older receive breast screening according to the NHS Breast Screening Programme timescales, while women younger than 50 continue to have annual mammography until they enter the routine NHS Breast Screening Programme.
Healthcare professionals ensure that women treated for early breast cancer have annual mammography for 5 years after treatment; and that after 5 years women who are 50 or older receive breast screening according to the NHS Breast Screening Programme timescales, while women younger than 50 continue to have annual mammography until they enter the routine NHS Breast Screening Programme.
Commissioners ensure they commission services that ensure that women treated for early breast cancer have annual mammography for 5 years after treatment; and that after 5 years women who are 50 or older receive breast screening according to the NHS Breast Screening Programme timescales, while women younger than 50 continue to have annual mammography until they enter the routine NHS Breast Screening Programme.
Women treated for early breast cancer have an annual breast screen for 5 years after treatment. After 5 years women who are 50 or older have breast screening according to NHS Breast Screening Programme timings, whereas those under 50 continue with annual breast screening until they reach 50 and start screening through the NHS Breast Screening Programme.

Source clinical guideline references

NICE clinical guideline 80, recommendations 1.14.1 and 1.14.2.

Data source

Structure
a) and b) Local data collection.
Process
a), b) and c) National Cancer Dataset and Cancer Outcomes and Services Dataset (in development). Available from www.ic.nhs.uk

Equality and diversity considerations

This statement applies only to women because men are not screened for breast cancer, either routinely or following treatment for breast cancer.
Men are not screened for breast cancer because it is so rare, and those men who do have breast cancer will receive a mastectomy, which will leave no breast tissue to screen. The only circumstances in which a man with breast cancer would not receive a mastectomy are if he is not fit enough for the operation or the tumour is inoperable. In both these circumstances screening is inappropriate.

Multidisciplinary team

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People who develop local recurrence, regional recurrence and/or distant metastatic disease have their treatment and care discussed by the multidisciplinary team.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that systems are in place for the multidisciplinary team to discuss the treatment and care of all people who develop local recurrence, regional recurrence and/or distant metastatic disease.
Process
Proportion of people who develop local recurrence, regional recurrence and/or distant metastatic disease who are discussed by the multidisciplinary team.
Numerator – the number of people in the denominator whose treatment and care is discussed by the multidisciplinary team.
Denominator – the number of people who develop local recurrence, regional and/or distant metastatic disease.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for the multidisciplinary team to discuss the treatment and care of all people who develop local recurrence, regional recurrence and/or distant metastatic disease.
Healthcare professionals ensure that they discuss within the multidisciplinary team the treatment and care of all people who develop local recurrence, regional recurrence and/or distant metastatic disease.
Commissioners ensure they commission services that have systems in place for the multidisciplinary team to discuss the treatment and care of all people who develop local recurrence, regional recurrence and/or distant metastatic disease.
People with breast cancer that has spread or come back have their treatment and care discussed by a specialist breast cancer healthcare team (a multidisciplinary team).

Source clinical guideline references

NICE clinical guideline 81, recommendation 1.5.9.

Data source

Structure
Local data collection
Process
Local data collection

Definitions

This statement addresses people with recurrent and metastatic disease. All people with early disease have their treatment and care discussed by the multidisciplinary team as shown in other statements.
Multidisciplinary team discussions may include, but are not limited to:
  • oestrogen receptor (ER) and human epidermal growth receptor 2 (HER2) status
  • performance status of the patient
  • site and rate of progression of recurrent disease.

Key worker

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People with recurrent or advanced breast cancer have access to a 'key worker', who is a clinical nurse specialist whose role is to provide continuity of care and support, offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.

Quality measure

Structure
Evidence of local arrangements and written clinical protocols to ensure that people with recurrent and advanced breast cancer have access to a key worker, who is a clinical nurse specialist whose role is to provide continuity of care and support, offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.
Process
Proportion of people with recurrent or advanced breast cancer who have a key worker who is a clinical nurse specialist.
Numerator – the number of people in the denominator who have a key worker who is a clinical nurse specialist.
Denominator – the number of people with recurrent or advanced breast cancer.
Outcome
a) Patient satisfaction with access to a key worker.
b) Patient satisfaction with the information, support and signposting provided by the key worker.

Description of what the quality statement means for each audience

Service providers ensure people with recurrent or advanced breast cancer have access to a key worker, who is a clinical nurse specialist whose role is to provide continuity of care and support, offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.
Healthcare professionals ensure people with recurrent or advanced breast cancer have access to a key worker, who is a clinical nurse specialist whose role is to provide continuity of care and support, offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.
Commissioners ensure they commission services that provide people with recurrent or advanced breast cancer with access to a key worker, who is a clinical nurse specialist whose role is to provide continuity of care and support, offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.
People with recurrent or advanced breast cancer have access to a 'key worker' (a specialist nurse) who provides and coordinates care and support throughout their care, can refer them for psychological help if needed and is in contact with other healthcare professionals, including the GP and specialist palliative care services.

Source clinical guideline references

NICE clinical guideline 81, recommendation 1.4.1.

Data source

Structure
Local data collection.
Process
A Cancer Survivorship Survey was piloted in 2011 by the National Cancer Survivorship Initiative and contained a question about having a named nurse who patients could contact if they had a worry about their cancer care. Available from www.ncsi.org.uk
Outcome
a) and b) National Cancer Patient Experience Survey Programme 2010. Available from www.dh.gov.uk

Definitions

Adapted from 'Improving supportive and palliative care for adults with cancer' (NICE cancer service guidance, 2004):
A key worker is a clinical nurse specialist who, with the patient's consent and agreement, takes a key role in coordinating the patient's care and promoting continuity.

Brain metastases

This quality statement is taken from the breast cancer quality standard. The quality standard defines clinical best practice in breast cancer care and should be read in full.

Quality statement

People who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease are referred to a neuroscience brain and other rare CNS tumours multidisciplinary team.

Quality measure

Structure
Evidence of local arrangements to ensure that people who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease are referred to a neuroscience brain and other rare central nervous system (CNS) tumours multidisciplinary team.
Process
Proportion of people who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease who are referred to a neuroscience brain and other rare CNS tumours multidisciplinary team.
Numerator – the number of people in the denominator referred to a neuroscience brain and other rare CNS tumours multidisciplinary team.
Denominator – the number of people who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for people who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease to be referred to a neuroscience brain and other rare CNS tumours multidisciplinary team.
Healthcare professionals ensure they refer people who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease to a neuroscience brain and other rare CNS tumours multidisciplinary team.
Commissioners ensure they commission services that refer people who have a single or small number of potentially resectable brain metastases, a good performance status and who have no (or minimal) other sites of metastatic disease to a neuroscience brain and other rare CNS tumours multidisciplinary team.
People with breast cancer that has spread to the brain but nowhere else (or if spread to other areas of the body is minimal), are referred to a healthcare team specialising in brain cancer (a neuroscience multidisciplinary team).

Source clinical guideline references

NICE clinical guideline 81, recommendation 1.5.16 (key priority for implementation).

Data source

Structure
Local data collection
Process
Local data collection

Definitions

Neuroscience brain and other rare CNS tumours multidisciplinary teams are described in the National Cancer Peer Review Programme 'Manual for cancer services: Brain and CNS measures' (2011).

Effective interventions library

Successful effective interventions library details

Implementation

Costing support

Costing support includes national cost impact reports that summarise the national costs and savings and discuss the assumptions used; costing templates to assess the impact on local budgets; and costing statements when the impact is not significant or impossible to quantify at a national level.
Familial breast cancer: costing report
Familial breast cancer: costing template

Education tools

NICE has developed online learning modules, in collaboration with a range of providers, including BMJ Learning, to update knowledge on evidence and NICE guidance.
Suspected breast cancer – when you should refer: online educational tool

Quality standard support

Tools to support commissioners, providers and others in implementing the underpinning guidance, assessing the capacity and cost impact of the quality standard and identifying the potential commissioning issues in order to deliver associated outcomes.
Breast cancer: Quality standard support

Pathway information

Information for patients and the public

NICE produces booklets for patients and the public, called 'Understanding NICE guidance'. They summarise, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written a booklet for patients and the public explaining its guidance on each of the following topics.

Information about breast cancer

Familial breast cancer: the classification and care of women at risk of familial breast cancer in primary, secondary and tertiary care

Information about the NICE quality standard on breast cancer

Breast cancer quality standard

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If someone does not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent and the code of practice that accompanies the Mental Capacity Act. In Wales, healthcare professionals should follow advice on consent from the Welsh Government. If the person is under 16, healthcare professionals should follow the guidelines in Seeking consent: working with children.
1 August 2011 Arrow on Advanced breast cancer: Endocrine therapy path corrected.
30 September 2011 Breast cancer quality standards added.
25 October 2011 Separate pathways created for familial breast cancer, early and locally advanced breast cancer, and advanced breast cancer.

Supporting information

Information to remember when taking a family history

All relatives must be on the same side of family and be blood relatives of the consultee and of each other.
First-degree relatives: mother, father, daughter, son, sister, brother.
Second-degree relatives: grandparent, grandchild, aunt, uncle, niece and nephew; half sister and half brother.
Third-degree relatives: great grandparent, great grandchild, great aunt, great uncle, first cousin, grand nephew and grand niece.
Paternal history: two or more relatives diagnosed with breast cancer on father's side of family.
Very strong paternal history: four or more relatives diagnosed with breast cancer at younger than 60 years on father's side of family.

Unusual cancers

Bilateral breast cancer.
Male breast cancer.
Ovarian cancer.
Sarcoma at younger than age 45 years.
Glioma or childhood adrenal cortical carcinoma.
Complicated patterns of multiple cancers at young age.

Women with Jewish ancestry

Women with Jewish ancestry are around 5–10 times more likely to carry BRCA1 or BRCA2 mutations than women in non-Jewish populations.

Referral criteria from primary care to secondary care: women likely to be at more than raised risk

Is there at least one of the following present in the family history? A 'yes' to any indicates a positive referral.

Female breast cancers only

One 1st degree relative and one 2nd degree relative diagnosed before average age 50.
Two 1st degree relatives diagnosed before average age 50.
Three or more 1st or 2nd degree relatives diagnosed at any age.

Male breast cancer

One 1st degree male relative diagnosed at any age.

Bilateral breast cancer

One 1st degree relative where 1st primary diagnosed before age 50.
For bilateral breast cancer, each breast has the same count value as one relative.

Breast and ovarian cancer

One 1st or 2nd degree relative with ovarian cancer at any age and one 1st or 2nd degree relative with breast cancer at any age (one should be a 1st degree relative).

Referral criteria from primary care to secondary care: women likely to be at raised risk

Is there one of the following present in the family history?

Female breast cancers only

One 1st degree relative diagnosed before age 40.
One 1st degree relative and one 2nd degree relative diagnosed after average age 50.
Two 1st degree relatives diagnosed after average age 50.

Referral criteria from secondary care to tertiary care

Is there at least one of the following present in the family history? A 'yes' to any indicates a positive referral.

Female breast cancers only

Two 1st or 2nd degree relatives diagnosed before average age 50.
Three 1st or 2nd degree relatives diagnosed before average age 60.
Four relatives diagnosed at any age.
At least one must be a 1st degree relative of the consultee.

Ovarian cancer

One relative diagnosed with ovarian cancer at any age and on the same side of the family there is:
One 1st (including relative with ovarian cancer) or one 2nd degree relative diagnosed with breast cancer before age 50.
One additional relative diagnosed with ovarian cancer at any age.
Two 1st or 2nd degree relatives diagnosed with breast cancer before average age 60.

Bilateral breast cancer

One 1st degree relative with cancer diagnosed in both breasts before average age 50.
One 1st or 2nd degree relative diagnosed with bilateral breast cancer and one 1st or 2nd degree relative diagnosed with breast cancer before average age 60.
For bilateral breast cancer, each breast cancer has same count value as one relative.

Male breast cancer

One male breast cancer at any age and on the same side of the family there is:
One 1st or 2nd degree relative diagnosed with breast cancer before age 50.
Two 1st or 2nd degree relatives diagnosed with breast cancer before average age 60.
A formal risk assessment (usually done in tertiary care) shows a family history pattern that equates to: a 20% or greater chance of a BRCA1, BRCA2 or TP53 mutation being harboured in the family or a greater than 8% chance of developing breast cancer age 40–49 years or a 30% or greater lifetime risk of developing breast cancer.

Breast cancer surveillance

Women should be offered mammography and MRI scans of both breasts based on their age and estimated risk.

Patients aged 20–29 years

Mammography: Should not be available for women younger than age 30.
MRI: Should be available only for those at exceptionally high risk (that is, annual risk greater or equal to 1%), for example TP53 carriers.

Patients aged 30–39 years

Mammography: Should be available to women satisfying referral criteria for secondary or specialist care only as part of a research study (ethically approved) or nationally approved and audited service.
Individualised strategies should be developed for exceptional cases, such as women from families with BRCA1, BRCA2 or TP53 mutations (or women with equivalent high risk).
MRI: Should be available annually to:
  • women with a 10-year risk of greater than 8%
  • TP53, BRCA1 and BRCA2 mutation carriers
  • women who have not been tested but have a high chance of carrying a BRCA1 or TP53 mutation, specifically:
    • those at 50% risk of carrying a BRCA1 or TP53 mutation in a tested family
    • those at a 50% risk of carrying a BRCA1 or TP53 mutation from untested or inconclusively tested families with at least a 60% risk of a BRCA1 or TP53 mutation (that is, a 30% chance of carrying a mutation themselves).

Patients aged 40–49 years

Mammography: Should be available annually to women at raised and high risk satisfying referral criteria for secondary or specialist care.
MRI: Should be available annually to:
  • women with a 10-year risk of greater than 20%
  • women with a 10-year risk of greater than 12% whose mammography has shown a dense breast patternAs defined by the 3-point mammographic classification used by UK breast radiologists (Breast Group of the Royal College of Radiologists 1989)
  • TP53, BRCA1 and BRCA2 mutation carriers
  • women who have not been tested but have a high chance of carrying a BRCA1 or TP53 mutation, specifically:
    • those at a 50% risk of carrying a BRCA1 or TP53 mutation in a tested family
    • those at 50% risk of carrying a BRCA1 or TP53 mutation from untested or inconclusively tested families with at least a 60% risk of a BRCA1 or TP53 mutation (that is, a 30% chance of carrying a mutation themselves).

Patients aged 50 and over

Mammography: Should be available every 3 years as part of the NHS Breast Screening Programme. More frequent mammographic surveillance should take place only as part of a research study (ethically approved) or nationally approved and audited service.
Individualised strategies should be developed for exceptional cases, such as women from families with BRCA1, BRCA2 or TP53 mutations (or women with equivalent high risk).
MRI: Should not be available for women older than age 50.
Supporting information
An 8% risk aged 30–39 and a 12% risk aged 40–49 years would be fulfilled by women with the following family histories:
  • 2 close relatives diagnosed with average age < 30 years
  • 3 close relatives diagnosed with average age < 40 years
  • 4 close relatives diagnosed with average age < 50 years.
All relatives must be on the same side of the family and one must be a mother or sister of the consultee. A genetic test would usually be required to determine a 10-year risk of 20% or greater in women aged 40–49 years.
For the purposes of these calculations, a woman's age should be assumed to be 30 years of age for a woman in her thirties and 40 years of age for a woman in her forties. A 10-year risk should then be calculated for the period 30–39 and 40–49, respectively.
Before entry to a breast cancer surveillance programme, and at each subsequent change in the programme, women should be provided with a documented plan that includes:
  • written patient information and discussion on mammography and MRI, including the risks and benefits
  • a clear description of the methods and intervals
  • the reasons for any changes to the surveillance plan
  • sources of support and further information.
Women who have been referred to a clinical genetics centre who are not known to have a genetic mutation should be offered an assessment of their 10-year breast cancer risk using a validated tool (for example, Tyrer-Cuzick or BOADICEA) to assess whether they are or will be eligible for MRI.
Mammographic surveillance should be audited, to NHS Breast Screening Programme standards and as part of the NHS Research and Development Health Technology Assessment programme evaluation for women under 50 years with a family history, wherever possible.
When mammography is recommended in women under 50, digital mammography should be used in preference to conventional mammography at centres where this is available to NHS Breast Screening Programme standards.
MRI of both breasts should be performed to high quality standards ensuring high temporal and spatial resolution. Dynamic sequences are recommended post contrast. They should be double-read where possible.
MRI and mammography data should be collected for audit purposes to support a national database.
Support mechanisms (for example, risk counselling, psychological counselling and risk management advice) need to be identified and should be offered to women not being offered surveillance who have ongoing concerns.
On the basis of current evidence, ultrasound should not be used in routine surveillance practice but may have a role in problem solving mammographically or MRI-detected abnormalities.
All women at all care levels should receive standard written information that includes:
  • risk information about population level and family history levels of risk, including a definition of family history
  • the message that, if their family history alters, their risk may alter
  • breast awareness information
  • lifestyle advice, including information about HRT, oral contraceptives, lifestyle (including diet, alcohol etc.), breastfeeding, family size and timing
  • contact details of those providing support and information, including local and national support groups
  • the message that women can bring a family member/friend to appointments
  • details of any appropriate trials or studies that may be appropriate to consider taking part in.
In addition women being cared for in primary care should receive:
  • advice to return to discuss any implications if family history changes or breast symptoms develop.
Women being referred to secondary care should receive:
  • information on the risk assessment that may take place and advice on obtaining a comprehensive family history if required
  • information about potential outcomes, depending on the outcome of the risk assessment (including referral back to primary care, management in secondary care or referral to a specialist genetics service) and what might happen at each level.
Women being referred back to primary care should receive:
  • detailed information about why secondary or tertiary care is not required
  • advice to return to primary care to discuss any implications if family history changes or breast symptoms develop.
Women being cared for in secondary care should receive:
  • details of risk assessment outcome, including why not being referred to a specialist genetics service
  • details of surveillance options, including risks and benefits.
Women being referred to tertiary care should receive:
  • details of risk assessment outcome, including why being referred to a specialist genetics service
  • details of surveillance options, including risks and benefits
  • details of what to expect in a specialist genetics service, including counselling and genetic testing.
Women being cared for in tertiary care should receive:
  • information about hereditary breast cancer
  • information about genetic testing (predictive testing and mutation finding); what tests may mean; how informative they are likely to be; timescale for results
  • risks and benefits of risk-reducing surgery when it is being considered, including both physical and psychological impact.

Glossary

Hormone replacement therapy
Magnetic resonance imaging

Person has concerns about their risk

Person has concerns about their risk of developing breast cancer

Support and information

Support and information

Support and information

Important messages to share with women with concerns

Most women do not develop breast cancer, and of those who do, most will not have a known family history of the disease.
For most women, increasing age is the greatest risk factor.
The great majority of women with a family history of breast cancer do not fall into a high-risk category and do not develop breast cancer.
The great majority of women with a relative with breast cancer are not at substantially increased risk of breast cancer themselves.
NICE has produced a booklet for patients and carers explaining the guidance on familial breast cancer.

Source guidance

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CG41

Risk factors

Risk factors

Risk factors

HRT

Women with a family history of breast cancer who are considering taking, or are already taking, HRT should be informed of the increase in breast cancer risk with type and duration of HRT.
Advice to individual women on the use of HRT should vary according to the individual clinical circumstances (such as asymptomatic of menopausal symptoms, age, severity of menopausal symptoms, osteoporosis).
HRT usage in a woman at familial risk should be restricted to as short a duration and as low a dose as possible. Oestrogen-only HRT should be prescribed where possible.
A woman having an early (natural or artificial) menopause should be informed of the risks and benefits of HRT, but generally HRT usage should be confined to women younger than 50 years of age if at raised or high risk.
Alternatives to HRT should be considered for specific symptoms such as osteoporosis or menopausal symptoms.
Consideration should be given to the type of HRT if it is being considered for use in conjunction with risk-reducing gynaecological surgery.

Hormonal contraceptives

Advice to women up to age 35 years with a family history of breast cancer should be in keeping with general health advice on the use of the oral contraceptive pill.
Women aged over 35 years with a family history of breast cancer should be informed of an increased risk of breast cancer associated with taking the oral contraceptive pill, given that their absolute risk increases with age.
For women with BRCA1 mutations, the conflicting effects of a potential increased risk of breast cancer under the age of 40 years and the lifetime protection against ovarian cancer risk from taking the oral contraceptive pill should be discussed.
Women should not be prescribed the oral contraceptive pill purely for prevention of cancer, although in some situations, reduction in ovarian cancer risk may outweigh any increase in risk of breast cancer.
If a woman has a BRCA1 mutation and is considering a risk-reducing oophorectomy before the age of 40 years, the oral contraceptive pill should not be prescribed purely for the reduction in ovarian cancer risk.

Breastfeeding

Women should be advised to breastfeed if possible because this is likely to reduce their risk of breast cancer, and is in accordance with general health advice.

Alcohol consumption

Women with a family history should be informed that alcohol may increase their risk of breast cancer slightly. However, this should be considered in conjunction with any potential benefit of moderate alcohol intake on other conditions (such as heart disease) and adverse effects associated with excessive alcohol intake.

Smoking

Women should be advised not to smoke, in line with current health advice.

Weight and physical activity

Women should be advised of the probable increased postmenopausal risk of breast cancer associated with being overweight.
Women should be advised about the potential benefits of physical exercise on breast cancer risk.

Menstrual/reproductive factors

Healthcare professionals should be able to provide information on the effects of hormonal and reproductive factors on breast cancer risk.

Risk levels

Women at or near population risk of developing breast cancer (that is, a 10-year risk of less than 3% for women aged 40–49 years and a lifetime risk of less than 17%) are cared for in primary care.
Women at raised risk of developing breast cancer (that is, a 10-year risk of 3–8% for women aged 40–49 years or a lifetime risk of 17% or greater but less than 30%) are generally cared for in secondary care.
Women at high risk of developing breast cancer (that is, a 10-year risk of greater than 8% for women aged 40–49 years or a lifetime risk of 30% or greater) are cared for in tertiary care. High risk also includes a 20% or greater chance of a faulty BRCA1, BRCA2 or TP53 gene in the family.
The referral criteria given are examples of family histories that may equate to the levels of risk described above. Other family histories may also lead to a suspicion of an increased risk, due to the numbers of breast or other cancers in the family or in cases of bilateral breast cancer.

Source guidance

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CG41

Primary care management

View the 'Familial breast cancer: primary care management' path

Secondary care management

View the 'Familial breast cancer: secondary care management' path

Tertiary care management

View the 'Familial breast cancer: tertiary care management' path

Breast cancer is suspected

Breast cancer is suspected

Breast cancer is suspected

Quality standard

The breast cancer quality standard contains a quality statement about referral.

Quality standards

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1Referral

Implementation tools

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Suspected breast cancer – when you should refer: Online educational tool
Breast cancer: Quality standard support

Early and locally advanced breast cancer

View the 'Early and locally advanced breast cancer overview' path

Advanced breast cancer

View the 'Advanced breast cancer overview' path

Breast cancer services

Breast cancer services

Breast cancer services

NICE has published cancer service guidance on improving outcomes in breast cancer and supportive and palliative care for people with cancer.
Improving outcomes in breast cancer – manual update. NICE cancer service guidance (2002).
Improving supportive and palliative care for adults with cancer. NICE cancer service guidance (2004).

Paths in this pathway

Pathway created: May 2011 Last updated: October 2011

Copyright © 2013 National Institute for Health and Care Excellence. All Rights Reserved.

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