The majority of women with ovarian cancer have no identifiable predisposing historic or genetic risk factors. However, approximately 10% of these women have either a BRCA 1 or 2 gene mutation, 2 or more close relatives with breast or ovarian cancer, a personal history of breast cancer, or an Ashkenazi Jewish ancestry.1 While there continues to be no effective ovarian cancer screening test for the general population who have a 1.5% lifetime cancer risk, the subset of women with identifiable risk factors and lifetime ovarian cancer risk of up to 50% have been the focus of intense screening scrutiny.2
There is clear evidence that the surgical removal of both ovaries and fallopian tubes (risk reducing salpingo-oophorectomy—RRSO) reduces the chance of developing ovarian cancer by up to 96%.3 Given this stunning, life-saving success, one must ask if risk reducing surgery should be unambivalently offered to all women identified at risk. Ovarian cancers associated with BRCA mutations are diagnosed at a younger age than sporadic ovarian cancers.4 It may be that cancer risk reduction is greater for women who undergo surgery before the age of 50.5
The consequence of surgical menopause is not insignificant. Women less than 45 years old who undergo oophorectomy may have an increased mortality from cardiac disease.6 Women who do not take estrogen replacement therapy out of choice or due to contraindications may suffer from sleep disturbances, vaginal dryness, and vasomotor symptoms, and a reduction in libido has been reported in 20% of women with surgical menopause.7 Loss of reproductive potential and psychological body image alteration may also influence women's choices against surgical risk reduction.
While CA 125 and transvaginal ultrasound screening (periodic screening—PS) has been reported to reduce the stage at which ovarian cancer is detected,8 the recent “SGO White paper” reports that there is no proof that mortality is decreased with routine screening for ovarian cancer in either the high-risk or general populations by pelvic examinations, serum markers, or sonograms.9
Therefore, premenopausal women at risk for ovarian cancer face the dilemma of choosing between definitive risk reduction with potential significant medical and psychosocial consequences versus inadequate risk reduction and screening but preservation of endocrinologic functions. Westin et al from The University of Texas MD Anderson Cancer Center explore the consequence of this dilemma in their report, Satisfaction with Ovarian Carcinoma Risk Reduction Strategies for Women at High Risk for Ovarian and Breast Cancer.10
Using a series of validated instruments looking at satisfaction, quality of life, demographics, and beliefs, the authors surveyed high risk women who had chosen either PS or RRSO. Of the 544 women who were sent surveys, 58% returned surveys and after exclusions a total of 182 patients were analyzed. There were 120 women who chose PS and 62 who chose RRSO. The 2 groups were of similar ages and menopausal status. Seventy-four percent and 77% of women in each group, respectively, had experienced a breast cancer. While in general both groups were fairly satisfied with their choice of screening strategy, those who chose RRSO and those who had BRCA gene mutations were more satisfied. Endocrine related symptoms and sexual dysfunction were not associated with levels of satisfaction. Both groups had similar levels of cancer-related anxiety but there was more ambivalence in the PS group. The main factor associated with a reduced satisfaction was uncertainty in decision making.
Medical decision making harnesses the current body of medical knowledge, guidelines, clinical experience, physician bias, and patient choice. Patients prefer shared decision making but report that physicians do not always accurately weigh the pros and cons of treatment choices.11 In another study, patients' satisfaction with decisions concerning breast cancer prevention identified that when there was no clear best choice based on outcome evidence, this uncertainty was negatively related to decision satisfaction.12 In addition, patients' perception that their physicians were uncomfortable with this uncertainty further decreased their decision-making satisfaction.13
When there is uncertainty about appropriate medical interventions, how is success defined? Physicians are tasked with guiding women at high risk for ovarian cancer through the maze of information to 2 main options: screening versus risk reducing surgery. In contrast to a woman with a known malignancy who needs immediate therapeutic intervention, benefit from PS or RRSO is a guessing game as the absolute cancer risk of each individual woman is unknown.
If success is defined by outcome data, surgical intervention is clearly superior. In a recent prospective multicenter cohort study of 2482 women with BRCA mutations, women who underwent RRSO compared with those who did not had an overall lower all-cause mortality and lower ovarian cancer mortality (0.4% vs 3%).14 If success is defined by patient satisfaction, then the MD Anderson report reassures that, with expert counseling, most women are generally satisfied with their decision choices.
An individual woman's sense of self and autonomy become important components to decision making.15 In this setting, satisfaction is an existential concept that is important for quality of life. However, satisfaction is also linked with evidence-based practice. Uncertainty and ambivalence are generated by a lack of compelling data as in the choice of PS. These are the most important factors that undermine satisfaction.