What are the main consequences of breast cancer treatment?


It is recommended to refer patients who have undergone axillary treatment (axillary node dissection and/or axillary radiotherapy) to a physiotherapist for an outpatient consultation 5-7 days after treatment.


It is recommended to resume normal physical activities one week after surgery, taking the wound healing process into account. Fear of exercise must be prevented.


Within the framework of cancer rehabilitation it is recommended to discuss the topic physical training with each patient during treatment. There are no general medical reasons to hold back in physical training during treatment for cancer. Weight training may be worthwhile as part of this training; the training can be organised in such a way that an increase in muscle mass is achieved or at least maintained.


During the end evaluation of the physiotherapeutic treatment, it is recommended that the risk factors are discussed with the patient. If there are functional complaints or signs of lymphoedema it is recommended to make renewed contact with the treating physiotherapist.


It is recommended to refer the patient with oedema to a physiotherapist trained in oedema physiotherapy. In the treatment of lymphoedema it is recommended that a therapeutic elastic stocking is worn for life.


The use of unidimensional measuring instruments is recommended in the treatment of pain in patients with cancer, both for the surveillance of pain and evaluation of the effect of treatment.


The guideline development group is of the opinion that aside from the use of measuring instruments, a careful pain history should be taken and clinical examination conducted, to get a complete picture of the patient’s pain. Additional diagnostics are performed if required for a better analysis.


Measuring pain is the collective responsibility of physicians, nurses and the patients themselves. Deciding on one of the different treatment methods must take place after providing information to and consultation with the patient. To this end, patients can contact professionals at the outpatient clinics, the (oedema) physiotherapist and (if there are unexplained complaints and no result with oedema therapy) the pain outpatient clinics.


The following is advised for all patients with breast cancer who undergo adjuvant systemic treatment:

  • sufficient exercise, especially walking and the prevention of immobility, and
  • sufficient intake of calcium (1,000 – 1,200 mg d.d.), i.e. aside from basic nutrition the patient requires four units of dairy or slices of cheese, or supplementation using calcium tablets


The Health Council recommends that women > 50 years with a light skin colour who spend sufficient time outside use extra vitamin D (vitamin D2 = ergocalciferol or D3 = colecalciferol): 10 microgram d.d. = 400 IE. For women > 50 years with a dark skin colour or with body covering clothing this should be 20 microgram d.d. = 800 IE. This enables the current target value of 50 - 75 nMol/L for the vitamin D level in blood (25 OH vitamin D level = calcidiol level) to be achieved.


BMD by means of a DEXA scan is recommended for:

  • non-traumatic (vertebral) fractures
  • postmenopausal women being treated with aromatase inhibitors
  • women after a premature menopause < 45 years
  • women using tamoxifen during premenopause
  • If there are (combinations) of other risk factors as mentioned in table 1


Moment of BMD measurement:

  • For postmenopausal women - in the starting phase of treatment with aromatase inhibitors
  • For premenopausal women - a year after loss of ovarian function if being treated with tamoxifen only


Follow-up measurement during hormonal treatment:

  • Aside from stimulating physical activity and supplementing calcium and vitamin D as mentioned above, follow-up measurement is recommended (each time) after 1 to 2 years, if there is a T score of -1 to 2.5 without having experienced fractures and/or without treatment with bone resorption inhibitors. At a T score > -1 (normal), this period may be longer
  • If non-traumatic fractures occur
  • Every 2-3 years during use of bone resorption inhibitors


Treatment with bone resorption inhibitors

  • Treatment with bisphosphonates for a duration of 2 to 5 years is recommended at a T score of ≤ -2.5 (= osteoporosis)
  • Treatment with bisphosphonates for a duration of 2 to 5 years is recommended at a T score of -2 to -2.5 in the case of:
    • fractures
    • a premature menopause
    • tamoxifen use during premenopause
    • use of aromatase inhibitors in the postmenopause
  • At a T score of -1 to -2.5, an estimation of the fracture risk for the coming 10 years by means of the WHO Fracture Risk Assessment Tool ( may help the patient and physicians in assessing the patient for treatment with bisphosphonates.
  • Patients > 50 years with recent non-traumatic vertebral fractures are eligible for treatment, independent of the T score
  • Long-term (> 3 months, > 7.5 mg dd) use of corticosteroids is an indication for treatment with bone resorption inhibitors
  • Motivational support is essential for good compliance in oral therapy with bisphosphonates (and other treatments)


Which bone resorption inhibitor?

  • All modern bisphosphonates available have a proven favourable effect on the BMD and on the prevention of vertebral fractures and usually also on non-vertebral fractures. The first choice for fracture prevention in women (without therapeutic oestrogen depletion) is oral alendronate and risedronate; ibandronate and zoledronate are good alternatives and can also be administered in i.v. form
  • In patients with breast cancer, loss of bone density may be corrected with zoledronate, risedronate or ibandronate and clodronate
  • In postmenopausal women with breast cancer who use aromatase inhibitors, bone density may also be corrected using denosumab (s.c. injection)


Medical specialists and specialised nurses should actively pay attention to complaints and early effects of cancer and treatment using systematic early surveillance. Other professionals may be engaged to assist with this. It is recommended that agreements are made about the tasks involved.


It is recommended that during the entire treatment, also during aftercare, patients are regularly informed about social support groups and contact with fellow patients.


It is recommended that lifestyle advice is a fixed component of aftercare, because a healthy lifestyle reduces the risk of a recurrence and other health complaints and has a positive effect on fatigue, anxiety and depression.



Schedule 1: Aftercare in the first 5 years after diagnosis/last mammography before surgery


Patients without BRCA1/2 mutation

Patients with BRCA1/2 mutation

Clinical examination


Clinical examination





Hospital / P.E.T.


1 year


1 year




Note 1: The first mammography and/or MRI after treatment must be performed approximately one year after the last mammography/MRI before surgery

Note 2: Follow-up with MRI is not recommended for the general population

Note 3: Especially in the first year, attention should be given to psychosocial guidance. See chapter 13 for the individual aftercare plan.


Schedule 2: Aftercare (at least) 5 years after diagnosis/last mammography before surgery


Patients without BRCA1/2 mutation

Patients with BRCA1/2 mutation

£ 60 years at the time of follow-up

after mastectomy

after BCT

after mastectomy or BCT



Hospital / P.E.T.*

Clinical examination













60-75 years at the time of   follow-up




Coordinated by:

national breast screening programme

general practitioner

hospital / P.E.T.

Clinical examination





every two years**

every two years

depending on the ability to evaluate the mammography, annually or every   two years


> 75 years at the time of   follow-up

consider ceasing follow-up

*: Outpatient clinic for Hereditary Tumours

**: Once every two years


Note 1: If the patient has undergone a mastectomy, she can return to the national breast screening programme after 5 years and if she is older than 60 years. The specialist must actively refer her back to the national breast screening programme, because otherwise she will not be notified.

Note 2: If the patient has undergone a BCT, she can be referred back to the general practitioner for annual clinical examination after 5 years and if she is older than 60 years; mammography is performed every 2 years via the hospital in which the patient has received follow-up thusfar, because of positioning and evaluation problems associated with the operated and irradiated breast.The specialist must actively refer her back to the general practitioner.

Note 3: The duration of the follow-up should be determined in consultation between the physician and patient. When a patient is referred back, this must be accompanied by clear instructions for aftercare and what to do in case of complaints, see chapter 13.



Level 1

Axillary node dissection and/or axillary radiotherapy increases the risk of mobility limitations of the upper limbs, reduced strength, sensibility disorders, lymphoedema and seroma. This stabilises after 2 years.


A1        Kootstra 2010, KNGF Evidence Statement Borstkanker 2011


Level 1

Limited execution of shoulder exercises in the first week following surgery leads to less wound fluid and seroma.


Exercise therapy has a positive effect on the prevention of lymphoedema and the execution of ADL.


A1        KNGF Evidence Statement Borstkanker 2011


Level 1

In patients with an increased risk, regular measurement of both arms in the first year after surgery leads to early detection of lymphoedema. A therapeutic elastic stocking for a duration of 3 months is an effective aid if the volume increase is between 5 and 10%.


A1        KNGF Evidence Statement Borstkanker 2011


Level 1

Compression therapy, as a component of CDT, leads to a significant volume reduction in lymphoedema of the arm.


A1        KNGF Evidence Statement Borstkanker 2011

B          Damstra, 2009


Level 1

The treatment of lymphoedema must be closed with wearing a therapeutic elastic stocking for life.


A1        KNGF Evidence Statement Borstkanker 2011


Level 3

Risk factors for the development of postmastectomy pain syndrome are prior treatment for breast cancer, tumour location in the lateral upper quadrant, younger age and axillary node dissection.


B          Vilholm 2008


Level 1

HRT increases the risk of breast cancer in healthy women. HRT increases the recurrence rate after treatment of breast cancer.


A2        Chlebowski 2003, Holmberg 2004, Kenemans 2009


Level 1

Clonidine, gabapentine and certain antidepressants appear effective in reducing the frequency and severity of hot flushes.


A1        Rada 2010


Level 1

Early onset menopause, premenopausal use of tamoxifen and postmenopausal use of aromatase inhibitors are risk factors for the development of osteoporosis.


A2        Delmas 1997, Saarto 1997, Shapiro 2001, Greenspan 2007, Gnant 2008, Coleman 2007, Perez 2006, Eastell 2006, Hershman2010, Forbes 2009, Rabaglio 2009

B          Confavreux 2007

C          Bruning   1990


Level 1

Health providers should strive for optimisation of calcium and vitamin D intake in all women with an increased risk of bone loss. The recommendation for sufficient exercise also applies here.


A1        CBO 2010


Level 1

There has been sufficient evidence that the use of bisphosphonates significantly limits bone loss as a result of oestrogen depletion through the treatment of breast cancer. This has also been   demonstrated for denosumab in postmenopausal women using aromatase inhibitors.


A2        Delmas 1997, Saarto 1997, Greenspan 2007, Gnant 2008, Brufsky 2007, Lester 2008, Ellis 2008

B          Confavreux 2007


Level 1

It has not been clearly demonstrated that treatment with bisphosphonates during hormonal adjuvant therapy also leads to the prevention of fractures.


A1        Valachis 2010, Ellis 2008


Level 2

25-33% of patients treated for breast cancer continue to experience clinically relevant distress up to a few years after diagnosis and particular problems such as pain, lymphoedema, menopausal   problems, fatigue and sexual complaints remain for a longer period of time.


B          Kootstra 2008, Ganz 2002, Ganz 2003, Burgess 2005


Level 2

It has been shown that fatigue, poorer physical functioning, disturbed body image and a lower quality of life are the most frequent complaints as a result of radiotherapy and chemotherapy.


B          Vaittinen 2000, Hayes 2007, Montazeri 2008


Level 3

Patients, their partners and children may suffer long-term from problems in various areas as a result of the parent’s cancer diagnosis.


C          Pitceathly 2003, Hagedoorn 2007, Visser 2004, Huizinga 2005, Gazendam 2011


Level 3

On the one hand, routine frequent outpatient follow-up gives peace of mind, but on the other, it also induces anxiety and stress.


C          Pennery 2000, Beaver 2009


Level 1

Alternative forms, such as telephone follow-ups by a specialised nurse, aside from annual mammography, lead to a patient satisfaction and quality of life that is at least as high as outpatient aftercare by the medical specialist.


A2        Kimman 2010, Kimman 2011 (1)(2) Beaver 2009


Level 3

Literature is not clear on the effect of psychological interventions for people with cancer. Some types of therapy do seem to have an effect on reducing specific complaints, such as fatigue and anxiety.


C          Newell 2002, Lepore 2006


Level 2

Participation in a social support group/contact with fellow patients may be an important source of support and information for the patient.


B          Samarel 1997, Helgeson 1999


Level 2

The role of lifestyle is greater than is usually assumed. Positive effects have been determined for a healthy diet and regular exercise.


B         Kellen 2009, Stull 2007, McTeirnan 2010, Azambuja 2010, Toles 2008, Muraca, 2010

Literature summary

This paragraph discusses the consequences of (the treatment of) breast cancer that are not directly related to manifestations of the breast cancer itself. Guidance provided during adjuvant therapy with trastuzumab is detailed in chapter 6.



Aftercare begins with systematic detection of complaints. In the guideline Screening for psychosocial distress (, the Distress Thermometer is recommended as screening instrument for detection of (psychosocial) complaints [CCCN, 2010]. The Distress Thermometer assists care providers with insight in the severity and nature of problems experienced by patients on a physical, emotional, social, spiritual and practical level. In addition to this, screening and diagnostic instruments may be employed for specific complaints (for example, nutritional problems, depression, coping capacity

Locoregional effects: reduced shoulder function, lymphoedema and postmastectomy pain syndrome.

Physiotherapeutic treatment of locoregional effects of breast cancer and the scientific basis for this are outlined in detail in the Breast Cancer Evidence Statement, which can be found at [KNGF,2011]. The below texts and conclusions are based on this.


Reduced shoulder function

Patients who have undergone axillary node dissection and/or axillary radiotherapy have the highest risk of mobility limitations of the upper limbs, reduced strength, sensibility disorders, lymphoedema and seroma. Patients who underwent an axillary node dissection, have more mobility limitations after two years and more lymphoedema than patients who received an SN procedure. A difference in strength was no longer found between the two groups after two years [Kootstra, 2010]. Starting exercise therapy on day 5-7 after surgery has a positive effect on the prevention of seroma. Exercises under guidance of a physiotherapist give a significantly better shoulder function and a better quality of life than doing so independently. Exercise therapy (including resistance exercises) does not exacerbate lymphoedema and stimulates lymphatic drainage.



Studies have demonstrated that when patients receive postoperative physiotherapy and there is surveillance for lymphoedema, a rapid start can be made with the combination therapy of manual lymph drainage, compression therapy, exercise therapy and skin care (Complex Decongestive Therapy, CDT). The oedema is then less severe than with later detection and treatment. No evidence has been found that preventative treatment with manual lymph drainage is an effective intervention to prevent lymphoedema. In the case of subclinical lymphoedema (volume increase of 5-10%), a therapeutic elastic stocking for three months appeared to be an effective aid in reducing oedema. Compression is an essential component in the treatment of lymphoedema. Research on compression therapy (short compression bandages) in patients with moderate (20-40%) and severe lymphoedema (> 40%) showed that compression lead to significant reduction in oedema (OR 6.4). CDT is an effective treatment method in lymphoedema of the arm. Wearing a therapeutic elastic stocking can stabilise oedema or provide a possible improvement. The therapeutic elastic stocking does need to be worn for life.


Postmastectomy Pain Syndrome (PMPS)

Postmastectomy Pain Syndrome (PMPS) is defined as pain in the surgical area or in the ipsilateral arm, present at least 4 days per week with an intensity of > 3 on the numeric pain scale.The intercostobrachial nerve is usually involved. The pain complaints can occur immediately after surgery or months later: a pressing, burning sensation on the back of the arm, the front side of the chest wall and axilla, accompanied with anaesthesia. Secondly, there is the risk of limitation of the shoulder function through immobility. According to a study by Vilholm (2008), the prevalence of PMPS is 23.9% and the OR of developing PMPS after surgery is 2.88. Risk factors for the development of chronic pain are prior treatment for breast cancer (OR 8.12), a tumour location in the upper lateral quadrant (OR 6.48), a young age (OR 1.04), ALND (OR 1.99). More pain was reported after supraclavicular radiotherapy or in the axillary.

The complaints may vary from disruptive to extremely strong. The use of unidimensional validated measuring instrument like the VAS [Gracely, 1978], NRS [Jensen, 2003] and VRS [Caraceni, 2002] are recommended in the national multidisciplinary guideline Pain and cancer (, both for the surveillance of pain and evaluation of the effect of treatment. Aside from the use of measuring instruments, a careful pain history should be taken and clinical examination conducted, to get a complete picture of the patient’s pain.

Treatment is symptomatic.


Consequences of premature menopause and/or (neo)adjuvant hormonal therapy

Hormone replacement therapy

Hormone replacement therapy (HRT) is logically the most effective method for combating the complaints of premature menopause, however HRT is strongly advised against in patients who have been treated for breast cancer with curative intent. The reason for this can be found in the finding that HRT in healthy women increases the risk of developing breast cancer, particularly when oestrogen-progestagen combinations are used [Chlebowski, 2003]. The strongest argument against the use of HRT is the finding in randomised trials that HRT increases the risk of a recurrence in women treated for breast cancer with curative intent [Holmberg, 2004]. In the randomised (Liberate) study with over 3,000 patients, tibolone was also found to reduce vasomotor complaints and osteoporosis but also toincrease the recurrence rate [Kenemans, 2009]. Menopausal complaints can have substantial impact on the quality of life. Careful consideration with the patient, of the severity of the complaints and the specific risks of interventions for the situation involved must lead to solutions that are tailored to the specific complaint. Moreover, HRT in combination with tamoxifen is not effective against menopausal complaints. The use of non-hormonal alternative medication is effective and promising: serotonin reuptake inhibitors (SSRI’s: venlafaxine (low dose 37.5-75 mg), paroxetine and fluoxetine) or GABA (low dose 300-900 mg).

A Cochrane review of 16 randomised studies was conducted in which clonidine, gabapentine and certain antidepressants appeared effective in reducing the frequency and severity of hot flushes. However, the results may be an overestimation due to the high dropout of patients in the studies [Rada, 2010]. The use of paroxetine and fluoxetine in combination with tamoxifen must be avoided.

Problems with vagina mucosa may be treated locally with non-hormonal moisturising creams and lubricants (KY gel, Hyaluronic acid, estriol cream short-term). If a young women receives adjuvant hormonal therapy after having had breast cancer, and would like to fall pregnant, this can thwart hormonal therapy.


Prevention of bone loss and osteoporosis

The guideline ‘osteoporose en fractuurpreventie’ (osteoporosis and prevention of fractures) [CBO, 2010] describes risk factors for the presence of osteopaenia, osteoporosis and associated fractures. A summary of the aspects important to the treatment of patients with breast cancer is provided below.


Hormonal therapy and osteoporosis

Especially hormonal effects of adjuvant treatment may increase the chance of bone loss in women with breast cancer. This is due to the (increased) depletion of oestrogens, important for an optimal condition of trabecular and (to a lesser degree) cortical bone. Premature (temporary) loss of ovarian function as a result of ovariectomy, LHRH analogues or chemotherapy leads to a reduction in bone mineral density (BMD) of 4-10% in the first years [Bruning, 1990; Delmas, 1997; Saarto, 1997; Shapiro, 2001; Greenspan, 2007; Gnant, 2008, Hershman 2010]. The bone density (partially) recovers again after the menstrual cycle returns [Gnant, 2008]. With the use of aromatase inhibitors in postmenopausal women, the chance of extra bone loss and fractures is significantly higher than with use of tamoxifen or placebo [Coleman, 2007; Perez, 2006; Eastell, 2006; Confravreux, 2007; Forbes, 2009; Rabaglio, 2009]. In contrast, the effect of selective oestrogen receptor modulators (SERM’s) on bone metabolism is less clear: tamoxifen induces limited bone loss (up to 4% after 3 years) in premenopausal women [Powels, 1996; Vehmanen, 2006]. With use of an LHRH analogue plus tamoxifen, bone loss (-11.6% after 3 years) is smaller than during the combination LHRH and an aromatase inhibitor (-14% after 3 years) [Gnant, 2008]. Most SERM’s have a protective effect on bone in postmenopausal women, including a reduction in the chance of hip fractures [Powles, 1996; Vehmanen, 2006, Vestergaard, 2008, Cooke 2008].

Measures for patients with an increased risk of bone loss and fractures consist of recommending sufficient exercise [Schwartz, 2007; Martyn-St James, 2008] and sufficient ingestion of calcium and vitamin D. In addition, medication-based interventions may be used. Addition of zoledronate to patients treated with LHRH analogues plus tamoxifen or anastrazole may prevent the bone loss resulting from endocrine treatment (maximum of 1 SD in T score (10% loss) after 3 years) [Gnant, 2008; Hershman, 2010]. Greenspan (2007) found that treatment with risedronate significantly reduced bone loss as a result of chemotherapy-induced loss in ovarian function. Bisphosphonates have been proven effective in the prevention of bone loss during use of aromatase inhibitors in postmenopausal women as demonstrated by Confravreux with risedronate (2007), Brufsky with zoledronate (2008), and Lester with ibandronate (2008). However, the effects of bisphosphonates on the prevention of fractures in patients with breast cancer are less clear. Valachis (2010) found in a meta-analysis of 14 randomised trials that treatment with bisphosphonates in patients receiving adjuvant hormonal therapy did not lead to a significant reduction in fractures.

Denosumab inhibits the ligand-activated Receptor Activator of the Nuclear factor Kappa B (RANK-L) on (pre-) osteoclasts, and as a result the osteoclast activity and bone loss. In postmenopausal women with osteoporosis or with a bone density of T -1 to < T -2.5 and use of aromatase inhibitors and use of denosumab (60 mg s.c. per half year), there was a statistically significant increase in bone density in the spine or outside by 7-9% and 3-6% respectively [Ellis, 2008; Smith, 2009; Cummings, 2009]. At the same time, the number of fractures decreased by approximately 70% [Smith, 2009; Cummings, 2009]. Registration for denosumab concerns women with osteoporosis and also postmenopausal women who use aromatase inhibitors. Denosumab is therefore an alternative for bisphosphonates, certainly if contraindications or other limitations exist for the latter. An important objection is still that possible long-term implications of long-term inhibition of RANK-L are unknown.

One should realise that prospective research on the effectiveness of most of these recommendations in the target group (patients with breast cancer) has not been conducted.



The bone mineral density (BMD) is usually measured by means of Dual Energy X-Ray Absorptiometry (DEXA) at the location of the lower thoracic spine and/or the hip. The terms osteopaenia and osteoporosis are used when the BMD, independent of the localisation, are >1 and >2.5 SD lower respectively than the average BMD of young adults (T-score).

Vertebral fractures can be identified using standardised imaging techniques of the lateral spine.


Indications for measurement of the BMD

The guideline for osteoporosis and fracture prevention [CBO, 2010] provides recommendations for the indication for performing a BMD measurement and for therapeutic interventions, these are detailed in the recommendations.


Indications for therapy

The ASCO guideline for women with primary breast cancer [Hillner, 2003] recommends treatment with bisphosphonates at a T score of ≤ -2.5, independent of the presence of fractures, but is a lot more held back at T scores of -1 to -2.5 than the guideline on osteoporosis and fracture prevention [CBO, 2010]. The therapy advice in the latter guideline has been chosen for the recommendations.


Duration of treatment with bone resorption inhibitors, follow-up and compliance

In the guideline on osteoporosis and prevention of fractures, a treatment duration of 1.5-5 years is mentioned. Bisphosphonate treatment was continued in most women with breast cancer during the period of adjuvant hormonal therapy. Evaluation of the BMD during treatment with bisphosphonates is recommended with caution in the osteoporosis guideline, and then every 2 to 3 years. Special attention should be given to the compliance of oral treatment with bisphosphonates. This was only an average of 50% after 1-2 years in the fracture studies [Kothawala, 2007]. The same recommendations apply to denosumab.


Psychosocial complaints and fatigue

Symptoms in the patient, partners and children

25-33% of breast cancer patients have been found to experience clinically relevant distress [Kootstra 2008, Ganz 2002, Ganz 2003, Burgess 2005].

Problems reported include:

-          pain, fatigue and sexual problems in the physical domain

-          anxiety, depression, insecurity, post-traumatic stress symptoms and loss of control in the emotional domain

-          loss of contacts and work in the social domain

-          questions about “why me” and “why now” and fear of dying in the existential/spiritual domain

-          difficulty with household tasks and care of children in the practical domain


The psychosocial and processing issues in the majority of patients may occur from the moment of diagnosis, but especially in the first year after treatment: the prevalence of depression and anxiety in cancer survivors reduces again in the course of the first year to levels comparable to that of the general population [Ganz, 1996]. A small subgroup still has demonstrably more symptoms after a few years [Ganz, 1996]. However, other psychosocial complaints may take a lot longer, such as the fear that the cancer will return, a negative body image or problems in the sexual domain. However, in studies these complaints do not translate into a poorer evaluation of the patient’s own quality of life [Ganz, 1996; Gulliford, 1997].

Young breast cancer patients, patients who receive radiotherapy and/or chemotherapy, those who were already emotionally vulnerable prior to diagnosis, patients with comorbidity, patients who experience insufficient social support, and patients with a low income are at higher risk. Confrontation with breast cancer also shows positive effects such as post-traumatic growth and “benefit finding” [Mols, 2005].

The earlier documented increased chance of heart and vascular disorders associated with radiotherapy appears to be less with the radiotherapy techniques currently being used. The late effects of radiotherapy have consequences for aftercare: radiofibrosis influences movement and increases the risk of lymphoedema [Collette, 2008]. As a result, there are large differences in quality of life [Vaittinen, 2000; Hayes, 2007; Montazeri, 2008].


Literature shows that partners, just like patients, respond with increased anxiety and depression to the diagnosis of cancer. Between 20% and 40% indicate they experience increased clinical psychological stress. Over time, anxiety and depression reduce to normal levels.

Of the children, 20-25%, a substantial proportion being children of a mother with breast cancer, indicate they experience more clinical emotional and behavioural problems and 29% indicate they experience post-traumatic stress symptoms when they hear a parent has cancer. The problems also decrease in children during the course of the first year after diagnosis when the treatment has positive effects, but approximately one-third continue to experience long-term emotional and behavioural problems and/or post-traumatic stress symptoms. Especially adolescent daughters and sons of primary school age are at risk. Parents themselves often do not seem to be well aware of the problems the children experience as a result of being confronted with cancer [Pitceathly 2003, Hagedoorn 2007, Visser 2004, Huizinga, 2005, Gazendam 2011].


Interventions for psychosocial complaints and fatigue

Guidance within programmatic follow-up

Traditionally, patients largely receive follow-up at an outpatient clinic by way of follow-up visits. An English study showed that patients were especially satisfied about follow-up visits due to the peace of mind they provide. It did appear that the tone of physicians was sometimes overly positive and focused on the short-term, while nurses were more active in  noticing unanswered questions and giving verbal and written information [Beaver, 2005]. The need for more information and the preference for additional tests correlate with the anxiety level of the patient [de Bock, 2004]. The fact that patients expect to have a higher chance of longer survival when metastases are discovered in an earlier stage, leads to a higher demand for tests for detection of metastases. This indicates that patients are not adequately informed about the primary aims of aftercare [de Bock, 2004].

Various studies have shown that frequent routine outpatient visits are insufficient to provide psychosocial support [Allen, 2002]. Pennery (2000) even outlines that outpatient visits are a source of anxiety and concern. Given visits to outpatient clinics place a lot of demand on the time of medical specialists, various studies have been conducted on alternative forms. Telephone follow-ups by a specialised nurse [Koinberg, 2004] or aftercare by the general practitioner [Grunfeld, 1996; Grunfeld, 2006; Gulliford, 1997] have been shown to be at least as effective as aftercare by the medical specialist, in terms of patient satisfaction as well as quality of life and time to detection of a recurrence. It appears from the randomised MaZorg study [Kimman, 2010; Kimman 2011 (1)(2)] and a comparable study in the UK that replacing the 3 monthly outpatient visits with telephone follow-up by the specialised nurse leads to an equally high quality of life and patient satisfaction compared to frequent outpatient follow-up.


Psychological interventions

Literature is not clear on the effectiveness of psychological interventions. Some evidence has been found for a few psychosocial interventions; this sometimes concerns a positive effect of an intervention for a specific problem such as a reduction in depression, anxiety, pain or fatigue, for example. It involves cognitive behavioural therapy, psychoeducation, problem-solving therapy, relaxation and professionally-guided social support groups. The review by Gottlieb (2007) (consisting of 44 empirical studies, including 32 RCT’s and 20 of which were breast cancer patients) shows positive effects by social support groups guided by professional care providers on the psychosocial functioning of cancer patients [Newell, 2002; Osborn, 2006; Gielissen, 2006; Rowland, 2009; Bloom, 2008; Gottlieb, 2007]. Both partners and children who indicate suffering from clinically elevated problems may benefit from a psychological intervention. This intervention may be focused on an individual, a couple or system/family [Pitceathly, 2003; Hagedoorn, 2007; Visser, 2004; Huizinga, 2005; Gazendam, 2011]

The most effective component of group interventions was the informative and educative aspect [Helgeson, 2000]. An education group programme was therefore compiled for the MaZorg study, in which the following aspects were discussed:

  • the normal effects of diagnosis and treatment
  • coping strategies
  • symptoms that patients can detect by self-examination
  • who patients can turn to in case of problems

An economic evaluation of the MaZorg study showed that telephone follow-up in combination with an educative group programme < 3 months after completing treatment was a cost-effective strategy, compared to telephone follow-up with the group programme, or outpatient follow-up with or without the group programme. This applied to all patients who received treatment with curative intent [Kimman, 2010; Kimman 2011 (1)(2).


Cancer rehabilitation

Aside from guidance by nurse specialists and informative group programmes, cancer rehabilitation has been found effective in reducing and dealing with residual complaints. The majority of studies on rehabilitation concerns patients with breast cancer. In the relevant guideline, the description of cancer rehabilitation is based on the definition by the Dutch Healthcare Insurance Board (College van Zorgverzekeringen (CVZ)): care that is focused on the functional, physical, psychological and social problems associated with cancer, including aftercare and rehabilitation. For more information, see the guideline Cancer rehabilitation on [CCCN, 2011].


Contact with fellow patients

Only a few studies have looked at the effect of non-professional guided support groups. The reasons breast cancer patients participate in support groups is to become more knowledgeable about the disease, the treatment and effects of treatment in daily functioning, sharing emotions and concerns, and to learn about the manner in which others adjust to the disease, through fellow patients [Samarel, 1997; Helgeson, 1999]. A clear conclusion cannot be drawn about the effectiveness of this in achieving these aims. Partly given the importance of mutual recognition and acknowledgement of problems and complaints, the importance of social support and the negative effects of social isolation, the last form deserves sound attention.

The Dutch Breast Cancer Patient Organisation known as Borstkankervereniging Nederland (BVN) and the Dutch foundation Stichting de Amazones are the most important support groups for breast cancer patients. For women with hereditary breast cancer, there is the working group erfelijke borst-eierstokkanker (‘hereditary breast-ovarian cancer’, The BVN has documented quality criteria for diagnosis and treatment from the patient perspective [BVN, 2003]. With the Monitor breast cancer care, BVN combines patients’ experiences with information about the care programme offered by different hospitals. In doing so, they support patients in their choice of the hospital for treatment.

The Dutch foundation Stichting de Amazones is focused on young women with breast cancer. They provide specific information for this patient group and offer them the possibility to search for fellow patients with a similar type of diagnosis or treatment. The foundation Stichting Mammarosa has the aim of providing information about breast cancer to women of foreign origin, and improving communication with this group.


Resuming work

There is an increasing insight that work, aside from being a burden, is also an important stabilising factor in most people’s lives and is a source of pleasure and adds meaningfulness to people’s existence [Blauwdruk Kanker en Werk (‘Blueprint Cancer and Work’), 2009].


Lifestyle advice

Lifestyle is defined as: actions people take to improve/maintain his/her health by, for example, regularly exercising and eating healthily. Little is known as yet about the relationship between lifestyle and physical and psychosocial complaints in the period after ending treatment. The results available appear to ascribe a more prominent role to lifestyle than is often assumed. A healthy diet and regular exercise appear to reduce complaints of fatigue, anxiety and depression. A healthy lifestyle also reduces the risk of recurrence, cardiovascular diseases, diabetes, osteoporosis and premature (both cancer and non-cancer related) death. Especially for obesity, results show a negative effect in breast cancer patients: women who are overweight have a poor prognosis. Many patients are not aware of the important role a healthy lifestyle plays in later health complaints. However, improvement in lifestyle is extremely important in this group, given their greater chance of developing physical and psychosocial complaints [Kellen, 2009; Stull, 2007; McTeirnan, 2010; Azambuja, 2010; Toles, 2008; Muraca, 2010].


Care for the patient with metastatic disease

Life expectancy of patients with breast cancer has increased due to the vastly improved treatment of breast cancer and metastases. The consequence of treatments and symptoms of progressive disease are a broad scale of non-tumour-specific complaints. An extensive set of national multidisciplinary guidelines may be found at - the database with guidelines for palliative care by the CCCN. Guidelines in the area of symptoms, the end of life, as well as other guidelines for palliative care can be found at Pallialine.


If there are no limitations in ADL with underlying disorders in muscle and joint function, a patient referral to a skin therapist instead of to a physiotherapist may also be considered.


The use of hormonal contraception is advised against on the basis of the same arguments as with HRT. A Mirena spiral may be considered in the case of hormone receptor-negative tumours. Substantiating literature is still lacking.

Authorization date and validity

Last review : 13-02-2012

Last authorization : 13-02-2012

The national Breast Cancer guideline 2012 is a living guideline, in other words there is no standard term of revision. NABON continually watches at new developments and clinical problems in the areas of screening, diagnostics, treatment and aftercare, and whether this requires an update.

Initiative and authorization

Initiative : Nationaal Borstkanker Overleg Nederland

Authorized by:
  • Nederlandse Internisten Vereniging
  • Nederlandse Vereniging voor Heelkunde
  • Nederlandse Vereniging voor Psychiatrie
  • Nederlandse Vereniging voor Radiologie
  • Nederlandse Vereniging voor Radiotherapie en Oncologie

General details

Approximately 14,000 women (and 100 men) are diagnosed with invasive breast cancer each year in the Netherlands, and about 1,900 have an in situ carcinoma. A woman's risk of having breast cancer over the course of her life is 12-13%. This means that breast cancer is the most common form of cancer in women in the Netherlands. Early detection, particularly via national breast cancer screening, combined with adjuvant therapy followed by locoregional treatment, improves the prognosis in women with breast cancer

The guideline on Breast Cancer Screening and Diagnostics, published in 2000, was updated in 2007. In 2002, the first multidisciplinary National Breast Cancer Guideline was published, it was revised in 2004, 2005 and 2006. In 2008 both guidelines were combined to Breast Cancer Guideline, which 2012 revision is now effected.

Scope and target group

This guideline is written for all the members of the professional groups that have contributed to its development.


This guideline is a document with recommendations and instructions to support daily practice. The guideline is based on the results of scientific research and expert opinion, with the aim of establishing good medical practice. It specifies the best general care for women with (suspected) breast cancer and for those who are eligible for screening. The guideline aims to serve as a guide for the daily practice of breast cancer screening, diagnostics, treatment and aftercare. This guideline is also used in the creation of informational materials for patients, in cooperation with the KWF (Dutch Cancer Society).

Samenstelling werkgroep

A core group consisting of a radiologist, surgeon, pathologist, medical oncologist and radiation therapist began preparing for the revision of the breast cancer practice guidelines in 2009. A multidisciplinary guideline development group was formed in early 2010 to implement the revision. This group consisted of mandated representatives from all of the relevant specialisations concerned with breast cancer, plus two delegates from the BVN (Dutch Breast Cancer Society) (see list of guideline development group members). The benefits of such a multidisciplinary approach are obvious: not only does it best reflect the care, but it offers the greatest possible expertise for the guideline. In composing the development group, geographic distribution of the members, balanced representation of the various organisations and agencies concerned, and a fair distribution in academic background were taken into account as much as possible.


The guideline development group received procedural and administrative support from IKNL (Comprehensive Cancer Centre for the Netherlands) and support on methodology from Bureau ME-TA. Partial funding was obtained from SKMS (Quality Funds Foundation of Dutch Medical Specialists). This subsidy would not have been possible without the extensive assistance provided by the NVvR (Radiological Society of the Netherlands).

Declaration of interest

Partial funding for the guideline revision was obtained from the Society of Dutch Medical Specialists in the framework of the SKMS. IKNL sponsored some of the cost. On two occasions, as well as at the beginning and end of the process, all of the members of the guideline development group were asked to fill out a statement of potential conflicts of interest, in which they stated their relationship with the pharmaceutical industry. A list of these statements of interest can be found in the appendices.

Patient involvement

In developing this guideline, four clinical questions were formulated. These questions emerge from an inventory of clinical problems collected in the field from professionals, patients and patient representatives.


Also, A multidisciplinary guideline development group was formed in early 2010 to create and implement the revision. This group consisted of mandated representatives from all of the relevant specialisations concerned with breast cancer, plus two delegates from the BVN (Dutch Breast Cancer Society).


Method of development

Evidence based


Feasibility has been taken into account in developing the guideline. This included attention to factors that could promote or hinder putting the advice into practice. Examples include the implementation of an analysis of problems, the multidisciplinary composition of the guideline development group, and making active use of support from the guideline development group members. Presenting the draft guideline to the field and communicating what, if anything, is being done with the responses, also promotes implementation. In this manner, a guideline has been developed that answers current questions in the field.

The guideline is distributed widely and is available in digital form on the Dutch Guideline Database. The guideline may also be brought to the attention of a wider audience in other periodicals or continuing education sessions, for example. To promote use of the guideline, we recommend that the regional tumour working groups and group practices, as well as scientific and professional organisations, repeatedly bring the guideline to the attention of their members. Any problems that may arise in using the guidelines can then be discussed and, when appropriate, submitted to the national guideline development group, as it is a "living" guideline. If desirable, parts of the guideline can be made more explicit by formulating regional additions or translation to the local situation in departmental and/or hospital protocols.

In principle, indicators are determined during development of the guideline that can be used to monitor implementation of the recommendations. Via a documentation project, these indicators can then be used to determine the extent of compliance with the guideline. The information from the documentation project becomes input for the revision of the guideline.

Methods and proces

This module has been evidence-based revised in 2008 and consensus based updated in 2012.


A revision of an existing guideline consists of revised and updated text. Revised text is new text based on an evidence-based review of the medical literature; updated text is the old guideline text which has been edited by the experts without performing a review of medical literature. Each section of the guideline states what type of revision has taken place. Each chapter of the guideline is structured according to a set format, given below. The purpose of this is to make the guideline transparent, so that each user can see on what literature and considerations the recommendations are based on.


Description of the literature

To the greatest extent possible, the answers to the fundamental questions (and therefore the recommendations in this guideline) were based on published scientific research. The articles selected were evaluated by an expert in methodology for their research quality, and graded in proportion to evidence using the following classification system:


Classification of research results based on level of evidence


Research   on the effects of diagnostics on clinical outcomes in a prospectively   monitored, well-defined patient group, with a predefined policy based on the   test outcomes to be investigated, or decision analysis research into the   effects of diagnostics on clinical outcomes based on results of a study of   A2-level and sufficient consideration is given to the interdependency of   diagnostic tests.


Research   relative to a reference test, where criteria for the test to be investigated   and for a reference test are predefined, with a good description of the test   and the clinical population to be investigated; this must involve a large   enough series of consecutive patients; predefined upper limits must be used,   and the results of the test and the "gold standard" must be   assessed independently. Interdependence is normally a feature of situations   involving multiple diagnostic tests, and their analysis must be adjusted   accordingly, for example using logistic regression.


Comparison   with a reference test, description of the test and population researched, but   without the other features mentioned in level A.


Non-comparative   trials


Opinions   of experts, such as guideline development group members



Based on the medical literature, one or more relevant conclusions are made for each section. The most important literature is listed according to the level of evidential strength, allowing conclusions to be drawn based on the level of
evidence. All the medical literature included in the conclusion is described in the bibliography.


Classification of conclusions based on literature analysis


Based   on 1 systematic review (A1) or at least 2 independent A2 reviews.


Based   on at least 2 independent B reviews


Based   on 1 level A2 of B research, or any level C research


Opinions   of experts, such as guideline development group members


Other considerations

Based on the conclusion(s), recommendations are made. However, there are other considerations that contribute to formulation of the recommendation besides literature evidence, such as safety, the patients' preferences, professional expertise, cost-effectiveness, organisational aspects and social consequences. The other considerations are mentioned separately. In this manner, it is clear how the guideline development group arrived at a particular recommendation.



The final wording of the recommendation is the result of the scientific conclusion, taking into account the other considerations. The purpose of following this procedure and drawing up the guidelines  in this format is to increase transparency.



An alphabetical list of literature references can be found at the end of the guideline.


All draft texts have been discussed by the guideline development group.

Search strategy

Searches are available upon request. Please contact the Richtlijnendatabase.