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Shared decision-making in breast cancer and mastectomy care

By Ms Niamh Byrne - 19th Nov 2023

breast cancer

Shared decision-making is more than being attentive to patients’ needs or concerns – it also represents an important shift in the roles of both patients and clinicians and stands in direct contrast to the paternalistic approach

Patient case report

The patient, a 68-year-old woman, attended her GP with left intractable, non-cyclical breast pain. Medical history included osteopaenia, anxiety, diet-controlled type 2 diabetes, hypertension, and high cholesterol. She had a clinical examination by the GP and was referred to the breast care service for review. Before she was seen in breast care, she re-presented to the GP with worsening breast pain. On re-examination, dimpling was present on the left breast.

She was reviewed in a triple assessment breast care clinic, where she was found to have a 12mm clinically- and radiologically-suspicious mass in the lower inner quadrant of the left breast. Her lymph nodes looked normal on imaging. Histology showed grade one invasive ductal cancer (IDC) with positive oestrogen and progoesterone receptors and negative HER2 receptor. Her case was discussed at the breast care multidisciplinary team (MDT) meeting and primary surgery was recommended in the form of a clinical wide local excision (WLE) and sentinel node biopsy (SLNB). While this recommendation was relayed to the patient, she opted to have a simple mastectomy with no reconstruction and SLNB. Her post-operative grading was in keeping with her original radiological sizing and pathology. She was then commenced on adjuvant endocrine treatment and is currently on surveillance. 

What factors impact on patient choice?

Traditionally, local recurrence rates (LRR) were thought to be slightly higher in the breast-conserving therapy (BCT) group, but with the continued advances in treatment, this is no longer the case. Multiple studies that assessed 20-year follow-ups of clinical trials have found that LRR and overall survival are equivalent. While BCT is seen as a more desirable option due to its less invasive nature, the choice between mastectomy versus BCT for the patient may be complicated and multifactorial.

A review of the literature found the main themes influencing women’s choice of mastectomy include it being the most reassuring option, the fear of recurrence, it being a more expedient treatment, and the possibility of avoiding radiation. In contrast, the choice for BCT includes issues related to body image, sexuality, and femininity, along with the knowledge of the LRR outcomes being equivalent.

A breast cancer diagnosis and its treatments can have a significant impact on a patient’s physical, psychological, and emotional wellbeing. Longer-term problems can occur with all surgical interventions, but the severity may vary dependent on the surgery type, patient preference, and the patient’s perceived satisfaction in the decision-making process.

What is shared decision-making?

Shared decision-making (SDM) is more than being attentive to patients’ needs or concerns. It also represents an important shift in the roles of both patients and clinicians, and stands in direct contrast to the paternalistic approach, whereby care is decided by healthcare professionals and dictated to the patient. For SDM to work effectively, both the clinician and the patient must actively engage in an exchange of information about the treatment options and benefits, alongside the patient’s own preferences, understanding, and beliefs. Interventions leading to SDM, such as multiple consultations where information is gathered and shared, have been shown to improve decision quality by enhancing knowledge, patient satisfaction with the decision-making process, ensuring realistic expectations, and decreasing fears and decisional conflict. When utilised effectively, SDM can also enhance or restore a patient’s autonomous capacity.

Some argue that within the complex setting of cancer care, SDM is difficult. Sometimes there is not a selection of treatments to choose from. For others, treatment choices are made by the MDT. Research has shown that patients with high levels of distress (such as a cancer diagnosis) are more inclined to forgo SDM, opting for the traditional paternalistic model of care instead. Adding to this, some practical problems are often cited as barriers to SDM. These include lack of time, poor fit into workflow, and scarce information designed for patient use, indicating that SDM is considered unfeasible in many busy cancer units.

How does the clinical nurse specialist support the cancer patient?

A clinical nurse specialist (CNS) is a nurse with advanced education and training in a specialised field, meaning they are best placed for patients to come with their worries and concerns. Within the cancer setting, the CNS ideally meets the patient at the point of diagnosis and acts as gatekeeper and advocate to the patient during their cancer journey. Utilising interpersonal skills, the CNS can address emotional cues and focus on not only the physical, but also the psychological impact of cancer. Building a good rapport with the patient is essential in caring for their psychological wellbeing, instilling person-centred care, and engaging in SDM.

Nursing theories, such as the person-centred nursing (PCN) theoretical framework, advocate the establishment of a therapeutic relationship with the patient by viewing the patient as a whole and considering their social background. By establishing the patient’s ability to retain and understand information, and willingness to be involved in their own care, the CNS can tailor the information given to help patients to feel heard and understood.

The concepts of the PCN framework consist of constructs that focus not just on the CNS rapport with the patient, but also the prerequisites of the CNS (their competence, interpersonal skills), and the work environment (staffing relationships, workplace culture), which when utilised collectively, can reach the goal of a positive patient experience and active involvement in their journey.

Mutual respect between the surgical team and the CNS allows the CNS to work autonomously with patients, providing ongoing support and education on treatment types and potential outcomes. CNS consultations in person and via phone negate the need for the patient to attend multiple consultations with the surgical team, freeing up time in clinic and allowing patients to return for more in-depth, structured discussions with the surgeon once they have been through all their options thoroughly. The CNS is in the ideal position to help the patient negotiate their cancer pathway and enable SDM to be utilised effectively in the cancer process.

Shared decision-making in general practice

Not all decisions in healthcare are complex, and patients often make choices without realising. Allowing vital signs to be monitored is an example of a patient consenting to an intervention, often without contemplating its outcome. Nurses negotiate with patients on a practical level every day. By building relationships with patients, treating them in a holistic manner, and allowing them time to discuss their worries and fears, nurses of all grades can facilitate their decision-making process. Time, staffing levels, and workloads can be barriers to both SDM and building therapeutic relationships, especially in a busy ward or practice environment. By knowing the supports available, or CNS contact details, GPs and general practice nurses (GPNs) can signpost patients to other members of the MDT to continue their SDM journey.

Post-operative care after a mastectomy

Many patients choose a mastectomy after the SDM process. Nurses caring for patients undergoing and following surgery are essential members of the MDT. Patients should be treated in a holistic manner throughout. Standard post-operative care, such as vital sign monitoring, fluid balance, pain management, wound care, and discharge planning are also innate components. Patients who undergo a mastectomy have additional, specific post-operative needs to minimise the development of potential complications. A core element of care is monitoring for signs of these potential complications.

Drain care

Haemoserous fluid collects post-operatively at the surgical site. Drains are inserted to collect and remove this excess fluid after surgery. Drain output needs to be monitored for volume and colour. Drains are typically removed when the volume decreases to less than 40ml in 24 hours. Patients need to be educated on, and be competent in, emptying drains and milking the tubing before discharge. The balance between keeping a drain to remove excess fluid and the risk of infection increases over time.

Seroma formation

After the drain is removed, it is common for the body to still produce haemoserous fluid. Ideally the amount of fluid produced can be easily re-absorbed and excreted by the body. If the amount of fluid collected is too large for the body to re-absorb, it can pool under the skin and is called a seroma. If the seroma is causing distress, or putting pressure on the scar line, it may need to be drained by the surgical team.

Altered sensation

The intercostal-brachial nerve can be damaged or cut during surgery, which can cause altered sensation and numbness in the axilla and medial aspect of the inner arm. Positioning with pillows and cushions can help with managing this discomfort.

Altered body image

A mastectomy will alter a woman’s appearance and body image. The psychological ramifications of surgery have been extensively studied, are far reaching, and can impact a patient’s physical, psychological, and emotional wellbeing. Patients may struggle to look at the wound. It is important to give patients the time and support to discuss their emotions and accept a new body image.

Fitting of bra and prosthesis

An external prosthesis is fitted post-operatively to give symmetry in clothing. Mastectomy bras are specially constructed to include pockets to hold a prosthesis. A temporary prosthesis is used in the immediate post-operative setting as it is made of foam and is, therefore, more comfortable while the wound is healing. A permanent prosthesis is made fully of silicone and is fitted approximately six weeks after surgery when the wounds have healed.


Patients are reviewed by the physio to discuss specific post-operative exercises that gently mobilise the arm to promote mobility and prevent cording.


Cording may occur post lymph node surgery. It is caused by thrombosis of the lymphatic channels, causing a tight band of tissue under the axilla that can extend down the arm. It can cause pain and decrease mobility. Exercise and massage can help manage symptoms.


Lymphoedoema is an accumulation of lymph fluid in the arm or chest. It is due to a disruption in the lymphatic system. Patients are educated on prevention, risks, and signs and symptoms pre-surgery. Treatment includes exercise, manual lymphatic drainage, and/or compression sleeve garments.


Caring for patients with a breast cancer diagnosis is complex and multifactorial and patients usually present with both physical and emotional needs. When faced with decisions during uncertain times, patients often look for guidance from healthcare professionals. Nurses are often the most accessible, and therefore, best placed to do this. By having expert knowledge and utilising SDM models, nurses can assist patients during all stages of their cancer journey.

References on request

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