Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy – A review of the literature

Highlights

• No studies have focused specifically on younger women's experiences of BPM.

• Research strongly suggests women want more information surrounding BPM.

• Women report positives such as reduced anxiety and negatives such as body image.

• Limitations in design and method are found, notably the lack of qualitative studies.

Abstract

A bilateral prophylactic, or preventative, mastectomy (BPM) for women at high risk of developing breast cancer (BC) can reduce their risk of developing the disease by up to 90% (relative risk reduction). An increasing number of women, including young women, are taking up this option. However, there is a dearth of information for younger women (under 40 years) choosing preventative mastectomy. In fact, no studies to date have specifically focused on younger women's experiences of a BPM and investigated their informational needs.

The purpose of this review is to report on the current literature surrounding the psychological experience of a BPM and the informational needs for women at high risk of developing BC with a particular emphasis on younger women.

Research has highlighted a range of psychological outcomes linked to preventative mastectomy, including positives such as reduced anxiety and negatives including impaired body image and sexuality. The literature strongly suggests women want more information surrounding BPM, particularly related to the after effects of the surgery, and the impact on their psychological wellbeing. Research method limitations and reporting has resulted in conflicting conclusions, making it difficult for women to be well informed. In particular, there has been little focus on the experiences and needs of younger women opting for BPM. Due to the unique needs of younger women and an increase in BPM rates for younger women, it is imperative that the needs of this group are addressed. Together these findings provide justification and recommendation for further research in this area.

Introduction

The removal of ‘healthy’ breasts is often seen as a ‘drastic’ or ‘radical’ procedure undertaken on the basis of fear [1], [2]. A bilateral prophylactic or preventative mastectomy (BPM) is the surgical procedure to remove a woman's breasts as a precaution to later developing breast cancer (BC). For women with a significant family history of BC, such as two or more first or second degree relatives on the same side of the family diagnosed with a breast or ovarian cancer, or a BRCA1/2 mutation, a BPM can reduce the relative risk that BC will develop by over 90% [3], [4]. Guidelines for BRCA1/2 carriers suggest breast screening should start between the ages of 25–30 years [5], [6], [7]. The recommendation for undergoing a BPM is that it has the greatest benefit in risk reduction for women before age 40 years [7]. Uptake of BPM has reportedly differed per country. In an Australian study BPM has been found to be relatively low with only 21% of BRCA1/2 carriers undergoing BPM (n = 325) [8]. However, in two European studies, from England (n = 211) and Denmark (n = 306), the uptake of BPM for high risk women was estimated to be between 40 and 50% [9], [10]. In both European studies higher uptake of BPM was significantly associated with younger women, with the average age being <35 years and <40 years respectively. These studies suggest that in recent years younger women are undergoing BPM more frequently. However, to date there appears to be no studies detailing the specific experiences of younger women (<40 years) who undergo a BPM.

Older and younger women differ in the various roles they adopt at certain points in their life and consequently have different priorities and responsibilities [11]. Erickson defined young adulthood to be between ages 18 and 40 years [12]. Young adults face many new challenges such as independence from parents, educational and career choices, exploring relationships, and making decisions about children and lifestyle [13]. Young women with a family history of BC are trying to balance these multiple emerging roles and significant life events while having to make decisions surrounding their increased BC risk [14]. In comparison, older women (>40 years) are more likely to be more securely settled, married or in a long term relationship, have school age or older children, have an established career [11], and may be more comfortable with their body image [15]. As women further age their roles change again and they may focus more on independence, retirement, widowhood, constrained finances and physical/mental function decline [16]. Based on these life stage role differences younger women are likely to have different experiences and perceptions when considering their increased BC risk and undergoing a BPM.