“It felt like unfinished business, it feels like that's finished now”: Women's experiences of decision making around contralateral prophylactic mastectomy (CPM)

Abstract

Objective Increasing numbers of women in the United Kingdom are choosing to have a contralateral prophylactic mastectomy (CPM) after diagnosis of breast cancer. Whilst research suggests that many experience high rates of psychological well‐being after CPM, professional guidelines suggest CPM is “not required” for the majority of unilateral breast cancer patients, and some individuals consider the surgery to be controversial. Existing research has explored patients' reasons for seeking CPM; however, little is known about their experiences of decision making. This study aimed to investigate women's experiences of decision making around CPM in the United Kingdom. Methods Semistructured qualitative interviews were conducted with 27 women, recruited through breast cancer support charities. All participants had CPM in the United Kingdom after a diagnosis of unilateral breast cancer, ductal carcinoma in situ (DCIS), or invasive ductal carcinoma. Data were analysed using thematic analysis. Results Two main themes were generated from the analytic process: “sanity check” (“battling for CPM,” “feeling stigmatised,” “seeking similar others”) and “reclaiming the body” (“being true to self,” “moving forward”). Women described defending their decision to have CPM, concerns that their thoughts about surgery may be considered “abnormal,” and seeking support from peers. The decision to have CPM was discussed in terms of their future relationship with their body and moving forward after cancer. Conclusions This study highlights the importance of interactions with health care professionals in the decision‐making experience, the role of peer support, and the need to fully understand the potentially complex and multifaceted nature of each woman's decision to seek CPM.

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China

“…Another important finding was that patients were significantly influenced by the other patients’ experience that is even more influential than the suggestion from the doctors, which was consistent with other studies 36 37. Interventions based on peer support could be a persuasive and powerful way to help patients acquire more disease-related knowledge, alleviate their anxiety and depression and reassess the impact of disease on family life and social functions, which could help them find the most suitable option of the treatment 38…”

Contralateral prophylactic mastectomy: A narrative review of the evidence and acceptability

“… Patients with low risk of contralateral breast cancer contribute to upward trend [ 12 , 43 , 44 ]. Surgeon’s opinion may have a large influence.16,85-87 Surgeons’ knowledge vary widely.88,89 Wide variation between surgeons in recommendations and approaches to the discussion with the patient [ 16 , 64 , 70 , 87 ]. …”

“…Wide variation between surgeons in recommendations and approaches to the discussion with the patient [ 16 , 64 , 70 , 87 ].…”

“…Still, patients’ wish to avoid screening as a reason for CPM has been suggested in several articles [ 8 , 27 , 62 , 69 ]. Two studies using interviews [ 62 , 70 ] found that anxiety towards mammograms and no trust in screening to detect future cancers were reasons why patients chose CPM. Also, patients who choose CPM believe that it has more benefits than harms [ 62 , 71 ].…”

“…Will I have better breast symmetry after CPM? A desire for breast symmetry is also a common reason to choose CPM, usually secondary to avoiding the risk of a contralateral breast cancer [ 15 , 16 , 50 , 70 ]. This is a consideration both for those who do and do not want to get reconstruction after CPM [ 15 , 70 ].…”