Psychosocial issues in breast cancer

Introduction

This chapter deals with some of the psychosocial issues associated with treating women with breast cancer; it is not exhaustive as the emphasis is on matters especially relevant to surgeons. We reflect on some of the most topical questions of the day. We discuss the issues when communicating genetic and genomic test results to patients to aid shared decision-making and quality of life (QoL) assessments of interventions aimed at preventing or ameliorating problems associated with diagnosis and treatments.

Communication

Effective communication between breast cancer surgeons and their patients is essential for high‐quality healthcare; it benefits the well‐being of patients and healthcare professionals (HCPs), influencing the rate of patient recovery, effective pain control, adherence to treatment regimens and psychological functioning. Although most deliberations about treatment options and delivery of healthcare services are handled by multidisciplinary teams, the onus remains on individual clinicians (and specialist nurses) to convey the pros and cons of the different surgical procedures, while considering the information and decision-making needs of each patient. There are a few simple ways to ensure that a consistent message is conveyed during a surgical treatment consultation. One is to direct patients to credible sources of written and web-based information, and allow them time during the consultation to ask questions. Another is by the provision of recordings or summaries of key consultations; this is shown to improve knowledge and help the patient and family to re visit the treatment options that have been outlined.

The provision of recordings or summaries of key consultations may benefit most adults with cancer. Practitioners should consider offering people recordings or written summaries of their consultations.

One US study explored the impact of providing information via a web-based decision aid (DA) versus standard websites ( Breastcancer.org ; National Cancer Institute (NCI), American Cancer Society (ACS)). A total of 309 newly diagnosed women with stage 0 to III breast cancer were randomised to one or other group. The web-based DA comprised didactic information, video clinical vignettes to promote consideration of personal preferences and modules about reconstruction, invasive and non-invasive cancer. The results showed that both groups found the information contained within the sites useful, but knowledge scores were higher in the DA group, and they were more likely to know that delaying surgery for a few weeks would not affect survival. This latter finding helps patients realise they have time to decide about treatment that they feel comfortable with, leading to fewer cases of decisional regret (DR).

Psychosocial characteristics that increase the likelihood of DR following breast reconstruction (BR) include depression, distress and negative body image. DR is also associated with an insufficient amount of, or unclear, information provided in the preoperative period. The question as to whether the type of surgery (breast-conserving surgery [BCS] versus mastectomy [M]) makes a difference in a patient’s’ QoL is often reported in terms of satisfaction with body image. Women who underwent M plus BR reported poorer body image than those who had BCS; this was for all time points except the last (2 years postoperatively). When the authors adjusted for severity of surgical side-effects (SEs), body image scores did not differ significantly from BCS patients, but women who had M alone reported better body image at 6 months than those who had BR ( P = 0.011).

A recent systematic review examined patient-reported QoL outcomes (from 1980 to June 2017) in women who had undergone BR ( n = 1474), BCS ( n = 2612) or M ( n = 1458). BR patients exhibited better physical health and body image than the M group but there was no clear evidence for superiority of BR over BCS for any of the QoL domains (physical, social, emotional, global health, sexual health and body image). This was probably due to confounding patient-specific and study-specific factors across the included studies, for example the type of reconstruction, age of the patient, reporting of post-surgical complications and different QoL questionnaires and follow-up time points for data collection.

BRCA I/II discussions

Publicity surrounding high-profile celebrity cases (e.g. Angelina Jolie) has significantly increased public awareness of the genetic risk to breast cancer. As a result, many surgeons are potentially involved in discussions about the need for genetic testing, the consequences of a test result and implications for other family members. Also, there are increasing calls to offer BRCA I/II testing to all breast cancer patients to assist treatment planning.

The prospective POSH study showed that young-onset breast cancer patients who have BRCA mutations have similar overall survival to non-carriers. One implication being that there is less urgency about decisions regarding strategies such as risk-reducing surgery. POSH showed for example that with modern magnetic resonance imaging (MRI)-based screening, patients can safely delay decisions about additional surgery until psychologically and physically recovered from their initial treatment. Likewise, risk-reducing bilateral salpingo-oophorectomy for BRCA I mutation carriers for the very youngest women might be timed following more thought and discussion about the patient’s desire for pregnancy and consequences of early oestrogen deprivation.

BRCA I/II test results can be positive or negative or report a variant of uncertain significance. These types of discussions involve communicating clearly risk information and corresponding referral and management options, which can be particularly challenging as many clinicians and specialist breast care nurses struggle when explaining numerical data. In addition, numeracy levels amongst the general public in the UK are poor, and many struggle to understand risk-based information, which can lead to mis-informed decision-making. Unfortunately, there is evidence that clinicians without specific genetic training often lack confidence and knowledge about the referral pathway, the genetic background of inheritance or how to speak to individuals about genetic testing and risk assessment. This is an area that warrants specialist training.