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Recommendations for follow-up of women with early breast cancer

Summary of trial or study results

Recurrence

Local recurrence

With current treatment protocols the local recurrence rate is 1% – 2% per annum after breast conserving treatment (and radiotherapy)1, and 1% after mastectomy. The usual treatments for local recurrence – surgery and radiotherapy – are more effective if used in the earliest phases. Treatment is aimed at maximising the chance of long-term local control, as the effect of uncontrolled local recurrence on the woman’s quality of life can be substantial.8

Local recurrences are more commonly diagnosed during routine follow-up at a time when the patient is asymptomatic. The percentage of patients with a recurrence being asymptomatic at time of detection varied between 9%6 and 52%.8

Distant recurrence

Common presentations in the symptomatic groups include bone pain, shortness of breath, palpable lesions or enlarged lymph nodes.9 Most patients who are symptomatic present at interval visits; however, some patients wait to attend routine follow-up visits to discuss symptoms.6,7,32

Contralateral breast cancer

New contralateral primaries are usually diagnosed as part of the regular mammographic screening while patients are asymptomatic.10,33,34 The outcomes are based on tumour characteristics and are independent of the original cancer.

Method of detection

The specific methods of detection studied include self detection, clinical examination, mammography and ultrasound. The reported rates that each of these methods contribute to detection varies. Many studies report that for symptomatic recurrences or new cancers, over 50% are detected by the patient.2 Over half of asymptomatic recurrences were detected by clinical examination.6,8,9

Two studies found 12% of asymptomatic recurrences were detected by mammography.7,9 Eighty-three percent of contralateral breast cancers detected by mammography alone had good or excellent prognostic characteristics.11 Two studies indicated that patients with contralateral breast cancer detected by mammography had increased overall survival compared to self detection.12,13 Two studies found patients with local recurrence detected by mammography showed an increased overall survival compared to physical examination.10,35

No primary studies were identified which addressed the use of PET or MRI in routine follow-up care.

One study reported between 8%–13% of recurrences were detected by ultrasound;34 however, no primary studies were identified which supported the routine use of ultrasound in follow-up care. The clinical or radiological grounds on which ultrasound may be used in addition to mammography include younger women, women with dense breasts, and those whose initial breast cancer was unable to be detected by mammography.

Overall, tumour markers have a low sensitivity but a high specificity for detection of recurrence of breast cancer.36-40 American Society of Clinical Oncology (ASCO) guidelines on tumour markers (2007) state that CEA is not recommended for routine surveillance of breast cancer patients after primary therapy.41

Interval and duration of follow-up

Disease-free survival and overall survival did not differ between 3-monthly and 6-monthly intervals, for either standard or intensive follow-up.14 Annual or biennial mammographic interval did not influence five-year disease-free survival.13 However, having a mammogram within the last 2 years, for women over 65 years with breast cancer, lowered breast cancer specific mortality and all-cause mortality.42 Studies have shown that attending more than one routine surveillance mammography after breast cancer treatment is associated with lower mortality.43,44 A potential confounding factor in these studies is that women who attend regular visits may be more likely to seek medical attention for signs or symptoms of recurrence, leading to earlier detection and better prognosis.43 Based on the purpose of follow-up, there are many factors that may influence decisions around the interval and duration of follow-up care. These may include the psychosocial needs of the women and monitoring side effects of treatment.

No primary studies were identified which addressed how long follow-up care should continue after diagnosis or treatment. A survey by de Bock et al (2004)45 found that 66% of patients would like to attend lifelong follow-up. A large survey of specialists found the preferred median follow-up duration to be 5 years.46 However, a small survey found that up to 59% of physicians thought follow-up should continue for 10 years or longer from initial diagnosis.47

Intensity of follow-up

A Cochrane meta-analysis,30 two randomised controlled trials14,48 and a prospective non-randomised cohort study49 investigated intensive follow-up versus standard follow-up schedules. Standard follow-up is defined as personal history, clinical exam and mammography, with additional tests as clinically indicated. Intensive follow-up includes the routine addition of some or all of: chest X-ray, liver ultrasound or echography, blood tests, bone scan and tumour markers. No difference in detection of recurrence,14,48,49 overall survival,30,49,50 or disease free survival,30,49,50 was found in any of the studies.

Table 1: Outcomes by provider of follow-up care
STUDY CHARACTERISTICS COMPARISON GROUPS OUTCOMES
Brown, 200217
N=61
Multicentre RCT
Patients assessed for 1 year

Standard clinic versus patient initiated follow-up

 

Quality of Life:
EORTC QLQ-C30 – Clinic group had higher (worse) results in arm and breast symptoms
HAD – no statistical difference
Satisfaction – Patient initiated group reported convenience as an advantage; Clinic group reported reassurance as an advantage
Grunfeld, 200615
N=968
Multicentre RCT
Median follow-up 3.5 years

Cancer centre versus family physician

 

Overall Survival – no statistical difference
Detection of Recurrence – no statistical difference

Quality of Life:
HAD, SF-36 MCS, SF-36 PCS – no statistical difference
Koinberg, 200416
N=264
Multicentre RCT
Patients followed for 5 years

Nurse-led versus specialist-led

 

Overall Survival – no statistical difference
Detection of Recurrence – no statistical difference


Quality of Life:
HAD, SaaC – no statistical difference

Koinberg, 200618
N=96
Non-randomised longitudinal study
Patients assessed for 1 year
Specialist follow-up versus multidisciplinary education program led by a specialist nurse Quality of Life:
FACT-G – Multidisciplinary group reported worse physical wellbeing at one year
SCA – no statistical difference
SOC – no statistical difference to one year, worse SOC for specialist group after one year
Etim, 200651
N=3828
Retrospective cohort (non-randomised)
Follow-up for 3 years
  1. Generalist only
  2. Breast cancer specialist only
  3. Shared care (generalist & specialist)
  4. Other cancer specialists exclusively

Shared care had a higher rate of mammography


Generalist only less likely to have mammography than breast cancer specialist only or shared care

Notes: EORTC QLQ C30 = European Organisation for Research and Treatment in Cancer Quality of Life Questionnaire; HAD = Hospital Anxiety and Depression; SF-36 MCS = Short Form 36 Mental Component Summary; SF-36 PCS = Short Form 36 Physical Component Summary; SaaC = Satisfaction and Accessibility Scales; FACT-G = Functional Assessment of Cancer Therapy – General; SCA = Self Care Aspects Scale; SOC = Sense of Coherence Questionnaire

Provider of follow-up

Five studies investigated provider of follow-up, three randomised controlled trials,15,16,17 one cohort study51 and one non-randomised trial.18 The two randomised controlled trials reporting on overall survival and detection of recurrence compared cancer centre versus family physician and nurse-led versus specialist-led care. Both found no difference in the number of deaths between groups and no significant difference between groups in the detection of recurrence.15,16

The five studies reporting on outcomes for different follow-up care providers are included in Table 1.

Patient preferences for provider of follow-up care vary between studies. While the majority of women may be willing to be followed-up by a family physician,14 some women may find this unacceptable. Preferences for a specialist follow-up provider range between 38%29 and 86%;45 while preferences for primary care follow-up ranged between 7%44 and 39%.28

Many primary care providers expressed uncertainty about how follow-up care should be provided52 and specialists have echoed this concern as they feel unsure of the general practitioners’ level of experience and training in oncology.46 In a large survey of specialists, breast surgeons took 60% of the lead in follow-up; however, they were supportive of GP follow-up as a method of reducing clinical workload.46 Concerns raised by specialists in this survey regarding experience and training of GPs in breast cancer follow-up46 were supported by a questionnaire of primary care providers, which found only 49% were comfortable having responsibility for breast cancer surveillance.52

The selection of the provider of follow-up care should be a decision made by the multidisciplinary team and the woman in the lead-up to completion of active treatment. Evidence indicates that a team approach to cancer care can improve quality of life for the patient.53 The multidisciplinary team may comprise the core disciplines and includes a surgeon, medical and radiation oncologist, radiologist, supportive care provider, specialist breast care nurse, general practitioner,19 and breast physician. A care coordinator may also be required. The selection of the provider for follow-up care should be based on the purpose of follow-up and the individual woman’s needs. This decision and the agreed schedule should be documented and communicated to all members of the follow-up team and the woman. Regardless of who provides follow-up care, the NBOCC* recommendations should be followed (see Recommendations and Appendix A).

Psychosocial care and quality of life

Quality of life was assessed in the context of psychosocial care. Studies relating to patient or physician perceptions and preferences of follow-up care used qualitative research methods. Some large surveys and questionnaires were conducted with patients or physicians; smaller studies (6 to 30 participants) used focus groups or interviews to identify themes or opinions. The details of follow-up care were often not provided in these studies.

Completion of active treatment may be a time of increased psychological vulnerability. A key theme for patients undergoing follow-up was the fear of recurrence and the need for reassurance that they were still disease-free.22-26 For some patients attending follow-up visits was a cause of anxiety;22,24,26-29 however, this was often reduced after attending the follow-up visit.28 Another theme which emerged in multiple papers was the need for continuity of care.23,28,54

Some papers suggested that women’s psychosocial needs were not being met, often due to time constraints, with clinics being very busy.22,26,29 In one study, 83% of breast cancer patients expressed a desire for counselling from either their family physician or specialists.55

Treatment side effects

While many of the studies acknowledge that follow-up can identify treatment-related side effects, there are no specific requirements for follow-up procedures other than discussing symptoms and problems with the patient.

A significant potential side effect after surgery and/or radiotherapy is secondary lymphoedema, affecting approximately 20% of breast cancer survivors.56 Early awareness of the signs and symptoms of secondary lymphoedema and appropriate referral can significantly reduce the development and severity of the condition.57

Many side effects are due to chemotherapy, endocrine or biological therapy. Some of the side effects will cease once treatment is finished. Newer drug therapies, such as aromatase inhibitors and trastuzumab, have individual side-effect profiles.58,59 NBOCC* recommends that patients receiving these drugs should be reviewed regularly and monitored for side effects by health professionals familiar with the drugs.58,59

Other follow-up considerations

The provision of follow-up care should include prevention, management or treatment of other aspects of health. There is evidence that maintaining a healthy body weight and exercise can improve survival and quality of life after breast cancer.60 Women should be encouraged in their maintenance of general health and wellbeing as this may influence the recurrence of breast cancer.61,62

The follow-up schedule should be tailored to individual situations and consider other medical requirements. There is a recent guideline recommending that a written plan be available to all members of the team.31

Additional factors that should be considered when planning follow-up care are listed in the recommendations.

* In July 2011, National Breast and Ovarian Cancer Centre (NBOCC) amalgamated with Cancer Australia to form a single national agency, Cancer Australia, to provide leadership in cancer control and improve outcomes for Australians affected by cancer.

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