Mr Clive Griffith (left) and Dr Wendy Carr explain the role of primary care in managing the side-effects arising from surgery for breast cancer and adjuvant treatment

  • The NHS Breast Screening Programme is still beneficial in saving lives, but needs increasingly robust patient information regarding benefits and possible unnecessary treatment
  • Primary care has a major role in promoting screening of breast cancer in the GP practice, particularly in inner-city areas
  • The majority of symptomatic patients with breast cancer still present to primary care; referral to a specialist clinic within 2 weeks is advised for all patients with breast symptoms
  • Most patients will need support (psychological, social, and financial) at some time during the diagnostic and treatment process
  • Approximately 5% of breast cancers are truly hereditary; the GP will be the initial consult if individuals are concerned about their personal risk following a diagnosis of breast and/or ovarian cancer in a family member
  • All treatments for breast cancer have side-effects that the primary care team may have to manage
  • The side-effects of aromatase inhibitors on bone health is increasingly important
  • Patient with lymphoedema will present in primary care although the incidence is now lower as a result of less invasive axillary surgery
  • Primary care will usually be the first contact for a patient who has clinical symptoms suggestive of breast cancer recurrence—early referral is encouraged
  • Many patients live with and beyond cancer for long periods of time and may experience long-term effects of breast cancer treatment
  • Primary care is ideally placed to manage the long-term effects of breast cancer treatment given its well-established ability to manage chronic disease and co-morbidities.

NICE Clinical Guideline 80 on Early and locally advanced breast cancer: diagnosis and management has been awarded the NHS Evidence Accreditation Mark.

This Mark identifies the most robustly produced guidance available. See for further details.

Breast cancer is the most common cancer in women in the UK—the lifetime risk of being diagnosed with this disease is one in eight for women1 and it is the cause of 15% of all female cancer deaths.2 Survival rates have improved significantly in the past 20 years and women aged between 50 and 69 years have at least an 80% chance of surviving for 5 years and a 70% chance of surviving for 20 years;3 however the UK still lags behind many European countries in long-term survival after breast cancer.4 This is thought to result from a combination of late presentation of symptomatic patients with advanced disease, despite public campaigns and the breast screening programme, and the approach to treatment of older patients with breast cancer. Additionally, there are regional differences in breast cancer survival as shown in Figure 1 (see page 2).

This article reviews NICE Clinical Guideline 80 (CG80) on Early and locally advanced breast cancer: diagnosis and treatment,5 within the context of a patient-centred, quality, productivity, and financially challenged NHS that is in transition. The recommendations set out some key priorities in the care of women with early and locally advanced breast cancer for both primary and secondary care.5 It aims to address inconsistencies in service provision and variation in practice. A central tenant of the guideline is that treatment and care is patient centred and informed decision making by patients is facilitated by the professionals involved in their care.5

Key recommendations for GPs and primary care

Each UK-based GP sees approximately eight patients with a newly diagnosed cancer each year, and it is estimated that one of these individuals will have breast cancer.6 Over 50,000 women are diagnosed annually with invasive or non-invasive breast cancer,3 and this number will rise in the coming years because of an increasingly elderly population.

Encourage attendance for screening

The NHS Breast Screening Programme provides free breast screening every 3 years for all women aged 50 years and over; and is being extended to also include those aged 47 to 73 years.7 One-third of women are diagnosed with breast cancer through the NHS Breast Cancer Screening Programme.7 Screening has been shown to reduce the inequalities associated with social deprivation in terms of 1-year and 5-year relative survival;3 however, there is considerable variation in uptake of breast-cancer screening, particularly in large inner-city areas, often where a large ethnic minority population and social deprivation exists.8 The provision of socially and culturally appropriate literature will help primary care to promote and improve patient awareness of breast-screening opportunities and encourage attendance.

Improving uptake of screening will require practice lists to be accurate and up to date as they are used to identify women who should attend for mammography.

A recent report commissioned by the National Cancer Director has shown that, although breast-cancer screening saves lives it can also result in overdiagnosis and overtreatment—some women will have an operation for breast cancer that, if left untreated, may not have developed into potentially fatal disease within their lifetime.9

Figure 1: Breast cancer: 5-year relative survival in women by Cancer Network—diagnosis years 2003–2005, age under75 years


CN=cancer network
Data provided by the West Midlands Cancer Intelligence Unit

Encourage patient presentation

Surveys of the general population show that there is a widespread lack of awareness of cancer symptoms and of the risk factors associated with cancer.6 Delay in presentation of the symptoms of breast cancer is more common in older women; the strongest barriers to consulting healthcare professionals in this age group are:

  • negative beliefs and attitudes on seeking help
  • fear of the diagnosis of cancer and its treatments
  • embarrassment.

Lower socio-economic status, lower educational attainment, and non-white origin have been associated with delays in presenting with symptoms of breast cancer.10 It is clear that a better understanding of the psychological and social factors contributing to a delay in presentation of breast cancer symptoms is needed to improve diagnosis.

Consider diagnosis and referral

Two-thirds of patients will present to primary care with significant breast symptoms that require urgent 2-week referral (i.e. suspected breast cancer) to a specialist breast clinic.11 A focus on earlier diagnosis is the key to improved survival, as highlighted by the Cancer Reform Strategy in 2007.12 A study by the British Association of Surgical Oncology showed that, despite the 2-week rule for suspected breast cancer, up to one-third of patients with symptomatic disease presented via the non-urgent stream, leading to considerable delays in diagnosis by the specialist breast clinic.11 It is a continued concern that almost one in four malignancies present as an emergency; this is particularly common in the younger age groups.6

A national audit of cancer diagnosis in primary care, published in 2011, showed that a diagnosis of cancer is considered several times per day; investigations are sometimes required for clarification; and 75% of patients are referred after one or two consultations.13

Figure 2: Postmenopausal adjuvant treatment with aromatase inhibitors26


BMD=bone mineral density; DXA=dual energy x-ray absorptiometry
*Previous low-trauma fracture after 50 years of age, parental history of hip fracture, alcohol intake of ?4 units/day, diseases associated with secondary osteoporosis, prior corticosteroids for >6 months, low body mass index (<22 kg/m2)
†Erythrocyte sedimentation rate, full blood count, bone and liver function (calcium, phosphate, alkaline phosphatase, albumin, aspartate aminotransferase/glutamyl transferase), serum creatinine, endomysial antibodies, serum thyroid-stimulating hormone
‡Alendronate 70 mg per week, risedronate 35 mg per week, ibandronate (150 mg po monthly or 3 mg iv 3-monthly), zoledronic acid 4 mg iv 6-monthly
§To be given as ?1 g of calcium and ?800 IU of vitamin D
| Biochemical markers such as serum C-terminal telopeptide of type I collagen or urinary N–telopeptide of type I collagen
Reproduced from Cancer treatment reviews, 34 (1), Reid D, Doughty J, Eastelic R et al. Guidance for the management of breast cancer treatment-induced bone loss: A consensus position statement from a UK expert group, S3–S18 (2008). With permission from Elsevier.

Management of side-effects from surgery and adjuvant treatment

Primary care has an important role in the management of side-effects following surgery from breast cancer and adjuvant treatment.


The main complications following axillary surgery are infection, haematoma, seroma, and restricted shoulder mobility.14 Many of these issues are managed in secondary care as there is ongoing involvement at this point, but increasing participation in day case surgery will result in these problems presenting to the primary care healthcare team, and require involvement of nursing and physiotherapy staff in the community.


Fatigue, nausea, and vomiting are common complications of chemotherapy that may occur early on in treatment. Although it is paramount that oncology specialists attempt to anticipate these effects by prescribing appropriate medication, primary care is often involved in managing more complex symptomatology.


Lymphoedema is a chronic condition that develops sometime after treatment for breast cancer and it can be a sign of axillary recurrence.

The risk of lymphoedema is low if sentinel node biopsy has been performed—approximately 3%—but rises to over 30% with axillary node clearance, particularly if radiotherapy has also been given.15 Access to local lymphoedema services from primary care varies from excellent to virtually non-existent; the latter is possibly as a result of recent budget cuts.

Menopausal symptoms

Most women treated for breast cancer experience menopausal symptoms as a result of oestrogen deprivation; these have a negative effect on their quality of life as well as that of their partners.16,17 Menopausal symptoms induced by therapy for patients with early and locally advanced breast cancer are often more frequent and severe compared with those of the naturally occurring menopause.18 Approximately 25% of women are premenopausal at the time of diagnosis19 and their menopausal symptoms may be temporary or permanent depending on age, type of malignancy, cumulative dose, and chemotherapy received. Individuals may also have to deal with the permanent loss of fertility.

There is a lack of public awareness that many forms of treatment are available for treating menopausal symptoms and in particular a reluctance to seek help when such menopausal symptoms result from treatments given in the context of a malignant disease.

Bone health

Bone loss induced by breast-cancer therapy is associated with a higher risk of fracture, and therefore increased clinical morbidity and mortality, reduced quality of life, and loss of independence. Aromatase inhibitors improve disease-free survival2024 and are used increasingly as adjuvant therapy in postmenopausal women with hormone-receptor positive-breast cancer. However, they accelerate bone loss and increase fracture risk as they inhibit the peripheral conversion of androgens to oestrogens.25

There is growing acceptance that fracture risk is multifactorial and that bone density is not the only characteristic that determines an individual’s propensity to fracture. Current best practice suggests that fracture risk assessment of established risk factors (including advancing age, previous fragility fracture after 50 years of age, family history of hip fracture, corticosteroid use, and lifestyle factors) should be carried out along with a dual energy X-ray absorptiometry scan; treatment should begin following a risk stratification protocol (see Figure 2). 26 Primary care is ideally placed to carry out such an assessment and to rule out secondary causes of osteoporosis (via haematological and biochemical investigations) as studies show that these are more common in the population with osteoporosis who have breast cancer.27

There is increasing evidence that oral and intravenous bisphosphonates and newer antiresorptive agents are effective treatments for individuals at risk of fracture, which again facilitates management of bone health within the community.20,21,2830

Oestrogen deprivation as a result of breast-cancer therapy causes a high rate of turnover and alterations in bone microarchitecture.31 This loss of bone density occurs more rapidly than in postmenopausal women and often takes place during the period when bone density is already declining because of age and menopausal transition.31

Chemotherapy late effects

The main risks of chemotherapy are long-term cardiac toxicity, secondary leukaemias, and deteriorating cognitive function.32 It is accepted that some patients may receive unnecessary chemotherapy and it is hoped that newer assessments of tumour biology, such as genomic testing, may help to resolve this.

Cardiac toxicity

Around 5% of patients receiving anthracycline-based chemotherapy (doxorubicin, epirubicin) will develop congestive cardiac failure.33

Secondary cancer

It is estimated that one in 20 breast cancer survivors will develop a secondary non-breast cancer, which corresponds to a 22% increase in relative risk over the general population. The main secondary cancers are acute myeloid leukaemia and myelodysplastic syndrome.33

Cognitive function

There is evidence that up to 20%–30% of patients treated with adjuvant chemotherapy will have some impairment of psychomotor functioning and verbal and working memory;33 however, other studies have shown no difference in cognitive function between patients with breast cancer who received chemotherapy and those who did not.34

Late effects of radiotherapy

Modern radiotherapy techniques aim to reduce heart and lung exposure to radiation, but these organs may still receive a small dose that could lead to long-term effects.35 The main risks of radiotherapy are heart disease (either coronary vessel disease or cardiomyopathy), pulmonary fibrosis, and in rare cases, angiosarcomas in the treated skin area.35,36

NICE implementation tools

NICE has developed the following tools to support implementation of Clinical Guideline 80 (CG80) on Early and locally advanced breast cancer: diagnosis and management. The tools are now available to download from the NICE website:

NICE support for commissioners

Costing report Commissioning.eps

Costing reports are estimates of the national cost impact arising from implementation based on assumptions about current practice, and predictions of how it might change following implementation of the guideline.

Costing template Audit.eps

Costing templates are spreadsheets that allow individual NHS organisations and local health economies to estimate the costs of implementation taking into account local variation from the national estimates, and they quickly assess the impact the guideline may have on local budgets.

NICE support for service improvement systems and audit

Audit support Education.eps

Audit support is developed to support the implementation of NICE guidance. The aim is to assist organisations with the audit process, thereby helping to ensure that practice is in line with the NICE recommendations.

NICE support for education and learning

Slide set Education.eps

The slides provide a framework for discussing the NICE guideline with a variety of audiences and can assist in local dissemination. This information does not supersede or replace the guidance itself.

Key to NICE implementation icons
 Commissioning.eps NICE support for commissioners
  • Support package for commissioners and others for quality standards
  • NICE guide for commissioners
  • NICE cost impact support for guidance (selection from national report/local template/costing statement, dependent on topic)
 Audit.eps NICE support for service improvement systems and audit
  • Forward planner
  • 'How to' guides (generic advice on processes)
  • Local government briefings (with Centre for Public Health Excellence)
  • Baseline assessment tool for guidance
  • Audit support including electronic data collection tools
  • E-learning modules (commissioned)
 Education.eps NICE support for education and learning
  • Clinical case scenarios
  • Learning packages including slide sets
  • Podcasts
  • Shared learning and other local best practice examples

The role of primary care

Most patients will begin and end their breast-cancer journey in primary care regardless of whether it ends in a personal cure when survivorship becomes important or subsequent palliative care for terminal disease. NICE recommends that a personalised care and treatment plan is given to both the patient and GP at the end of initial therapy. This plan should include the contact details of all healthcare professionals involved in the individual’s care.5

Psychological support

Between 22% and 47% of patients diagnosed with breast cancer will have episodes of significant anxiety and depression and 33% will experience sexual difficulties.26 Primary care has a major part to play in managing these problems. This represents a substantial workload for all members of the primary care healthcare team, and clinical commissioning groups will need to ensure that psychological services are available to support people living with and beyond a cancer diagnosis.

Sickness certification and return to work issues

Primary care is responsible for providing appropriate sickness certification and supporting the patient when they return to work. Breast cancer can be expensive to the patient in terms of frequent hospital visits and lack of income so access to financial support, from agencies such as Macmillan, is important.

Family history

The GP will usually be the first point of contact for a patient worried about a family history of breast and ovarian cancer.37 Approximately 5% of breast cancers are truly hereditary.38


Macmillan Cancer Support estimates that the number of UK survivors of breast cancer will increase from 340,000 in 2012 to 1.2 million by 2040.39 By living longer after successful treatment, patients will be at higher risk of developing subsequent breast cancers and long-term sequelae of treatment modalities, such as chemotherapy and radiotherapy. This in turn will have a major impact on health provision for these individuals, with significant implications for primary care. Living with or post cancer is considered to be akin to having a chronic disease and primary care is adept at managing such conditions. Many patients with cancer have multiple co-morbidities, which makes their long-term care more complex.


Clinical Guideline 80 emphasises the role of primary care in the early diagnosis of breast cancer and management of the patient through the breast cancer journey via a patient-centred approach to ensure high-quality care with a satisfactory outcome.5

  • CCGs will be judged on their commissioning performance via the NHS Outcomes Framework, which includes markers for 1- and 5-year survival for breast cancer
  • To examine and address variation in care, CCGs should consider sharing data with practices on mammography screening, 2-week referral ratios, and percentage of cancers diagnosed via this route
  • Clear care pathways should be established for referral to specialist services for both suspected new and recurrent breast cancer
  • CCGs need to be aware that from 1 April 2013, Public Health England and the NHSCB will be responsible for commissioning services for mammography, and the NHSCB will commission all radiotherapy and chemotherapy through specialist clinical networks
  • CCGs will remain responsible for commissioning services for breast cancer outpatients, and surgery and hormonal treatments—careful attention will be needed to coordinate the work of these commissioning bodies.
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  6. Department of Health. Improving outcomes: a strategy for cancer. London: DH, 2011. Available at:
  7. NHS Breast Cancer Screening Programme website. (accessed 16 November 2012).
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  26. National Collaborating Centre for Cancer. Early and locally advanced breast cancer: diagnosis and treatment. Cardiff: NCCC, 2009. Available at:
  27. Mann G, Kang Y, Brand C et al. Secondary causes of low bone mass in patients with breast cancer: a need for greater vigilance. J Clin Oncol 2009; 27 (22): 3605–3610. nhs_accreditation
  28. Hadji P, Ziller M, Kieback D et al. Effects of exemestane and tamoxifen on bone health within the Tamoxifen Exemestane Adjuvant Multicentre (TEAM) trial: results of a German, 12-month, prospective, randomised substudy. Ann Oncol 2009; 20 (7): 1203–1209.
  29. Rabaglio M, Sun Z, Price K et al. Bone fractures among postmenopausal patients with endocrine-responsive early breast cancer treated with 5 years of letrozole or tamoxifen in the BIG 1–98 trial. Ann Oncol 2009; 20 (9): 1489–1498.
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  38. Gadzicki D, Evans D, Harris H et al. Genetic testing for familial/hereditary breast cancer—comparison of guidelines and recommendations from the UK, France, the Netherlands and Germany. J Community Genet 2011; 2 (2): 53–69.
  39. Macmillan Cancer Support website. Number of older people living with breast cancer set to almost quadruple by 2040. Numberofolderpeoplelivingwithbreastcancer settoalmostquadrupleby2040.aspx (accessed 16 November 2012).  nhs_accreditation G