Objectives Most studies of quality of life following risk-reducing bilateral salpingo -oophorectomy (RRSO) and mastectomy (RRM) for inherited breast and ovarian cancer susceptibility were conducted before counseling protocols were established and included women at varying times since surgery. This study aimed to overcome these deficiencies and to provide current data on outcomes for this growing group of women.Methods Semi-structured interviews were used to explore the experiences of an Australian cohort of 40 high-risk women three years after they underwent RRM and/or RRSO. Data were analyzed using the method of constant comparison.Results Nineteen women underwent RRSO, 8 RRM and 13 both procedures. Two themes -looking different and feeling different -captured the psychosocial impact of surgery upon interviewees. All were relieved at having the risk of cancer substantially reduced that had previously been embodied in their breasts and ovaries; however, reducing risk by removing these body parts is not without costs. Interviewees reported experiencing a range of negative emotions and a range of unexpected bodily sensations following surgery and reflected upon both positive and negative changes in their appearance. Women said they had been unprepared for the lack of sensation in reconstructed breasts and/or the severity of menopausal symptoms, which often had a negative impact upon sexuality. ConclusionsAlthough women who undergo RR surgery are informed about its sequelae, however, few are entirely prepared for the reality of undergoing this procedure. We recommend that women who undergo these procedures should be provided with psychosocial support before and after RR surgery.
This study provides the first in-depth exploration of patient attitudes to scalp cooling. The results highlight a need for accurate information regarding efficacy and tolerability as well as hair care information to assist patients with their treatment decision-making.
Purpose: To prospectively investigate long-term psychosocial outcomes for women who opted for risk-reducing mastectomy (RRM) and/or risk-reducing salpingo-oophorectomy (RRSO).Methods: Unaffected women from high-risk breast cancer families who had completed baseline questionnaires for an existing study and subsequently underwent RRM and/or RRSO, completed measures of perceived breast and ovarian cancer risk, anxiety, depression, cancer-related anxiety, body image, sexual functioning, menopausal symptoms, use of hormone replacement therapy and decision regret three years post-surgery. Outcomes were compared to age-and risk-matched controls.Results: Participants (N=233) were 17 women who had RRM (39 controls), 38 women who had RRSO (94 controls) and 15 women who had RRM+RRSO (30 controls). Women who underwent RRM and those who underwent RRM+RRSO reported reductions in perceived breast cancer risk and perceived breast and ovarian cancer risk respectively, compared to their respective controls. RRM women reported greater reductions in cancer-related anxiety compared with both controls and RRSO women. RRSO women reported more sexual discomfort than controls and more urogenital menopausal symptoms than controls and RRM only women. No differences in general anxiety, depression or body image were observed. Regret was associated with greater reductions in body image since surgery and more sexual discomfort, although overall regret levels were low. Conclusions:Women who undergo RRM experience psychological benefits associated with reduced breast cancer risk. Although women who undergo RRSO experience some deterioration in sexual and menopausal symptoms, they do not regret their surgery decision. It is vital that women considering these procedures receive detailed information about potential psychosocial consequences.3
Background Polycystic Ovary Syndrome (PCOS) is a common female reproductive disorder with multiple manifestations. There are relatively few qualitative studies exploring the nature of living with PCOS despite its high prevalence. Qualitative research can enhance clinical practice via the provision of patient insights into the experience of living with their condition. Methods We conducted two focus groups and three semi-structured interviews of Australian overweight/obese women with PCOS aged 18–46 years between March and April 2017 who were recruited through social media advertising. Interviews and focus groups were audio recorded and transcribed verbatim. Thematic analysis was applied to the data, using the method of constant comparison. Results Ten women contributed data from two focus groups and two semi-structured interviews. Five themes emerged from the data: complexity of the condition with its multiple manifestations, difficulties with delayed diagnosis and lack of information provided after diagnosis, negative experiences on social media and online forums and the need for support, frustration over lack of a “cure”; and the impact of symptoms and concern about long-term sequelae. Conclusions Living with PCOS appears to generate a significant degree of anxiety about the future, dissatisfaction with current treatment models, and loss of feminine identity. Gaps in timely diagnosis, information and support provision need to be addressed. This includes supporting weight management as a fundamental concern for women with PCOS.
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