This is the first time the preventive strategies used by a French national cohort of unaffected female BRCA1/2 carriers and non-carriers have been documented for 5 years after routine genetic test result disclosure. The preventive strategies reported by respondents 5 years after disclosure show that in France, regular MRI surveillance (along with other breast imaging methods) is the most frequently preferred strategy among unaffected female BRCA1/2 carriers under 40 years of age, whereas RRSO tends to be combined with regular MRI breast imaging among older women (). When the decision to undergo RRM has been made, RRSO is generally undergone as well (). Transvaginal ultrasound investigations were undergone regularly by carriers without RRSO, and non-carriers appeared to favour opting for screening despite their low cancer risk (). In France, this screening is possible when prescribed by a medical practitioner. High breast/ovarian cancer risk perceptions were significantly affected in both the short- and long-term among carriers and non-carriers alike. In the long run, high breast cancer risk perceptions increased steadily with time among those without RRM (and decreased among the small sample with RRM), and a similar pattern was observed in the case of ovarian cancer risk perception and RRSO. RRSO had no effect on breast cancer risk perceptions.
It was reported some time ago that there is little enthusiasm in France for RRM, either among health professionals or women attending cancer genetic clinics.18, 19
The present results confirm the reluctance previously observed about these issues, although the rate of uptake of RRSO in France is comparable to that of other countries in the relevant age groups. Health professionals in France seem to expect MRI to be a highly effective means of detecting early forms of breast cancer, resulting in a good prognosis, whereas those in other countries prefer the highly effective surgical strategies available. It would be interesting to know the survival rates associated with each combination of preventive strategies, which would help to give women all the information required for their decision making to be autonomous and well informed.
It is worth discussing the increase observed here in the high breast/ovarian cancer risk perceptions of those who did not undergo risk reducing surgery, as well as the fact that RRSO did not decrease high breast cancer risk perceptions although this intervention is known to significantly decrease the risk of breast cancer.20
Finch et al21
retrospectively assessed the impact of genetic counselling and RRSO on breast and ovarian cancer risk knowledge and concluded that most women accurately perceived their breast cancer risks. Our results mean either that the information was not delivered by health-care professionals or that RRSO had no impact on a priori
lay beliefs about breast cancer risks. Cancer risk perception is a complex and subjective issue, because risk perception seems to have nothing to do with ‘risk knowledge'. Risk perception is known to determine behaviour, whereas people's ‘risk knowledge' is not predictive of their health-related behaviour.22
Risk perception may decrease when the main target organ of cancer has been removed surgically, whereas the situation is not the same when another organ is taken out, and the preventive action obtained through the suppression of hormonal effect. Previous studies have shown that women's psychological distress decreases after undergoing prophylactic mastectomy,23
and that their fear of developing cancer also decreases,6
which is similar to what occurs with high-risk perception or affective risk perception.24
However, other investigators have reported that the levels of distress are still high after these interventions, especially RRSO,25
possibly because these women's perception of the remaining risk of breast cancer has not changed significantly.
Our study had several limitations. First, respondents always differ from non-respondents, even if they have the same baseline characteristics. Only baseline breast self-examination practices differed here between respondents and non-respondents; therefore, we must remember that our results may not be completely representative of the whole cohort or of the whole French population of BRCA1/2 carriers, although we benefited from the advantages of multicentre, nationwide recruitment. Second, the same bias occurred as in previous studies, as following the same group of people with questionnaires may affect their spontaneous decisions during follow-up and hence the methods of surveillance and prevention they choose. We also have to take the time factor into account, since preventive recommendations evolve with time and while the people in this study were being tested, new preventive recommendations were issued in 2004, especially as regards prophylactic surgery, which was more strongly recommended16
In conclusion, women's cancer risk perceptions 5 years after disclosure of their BRCA1/2 status depend on decisions about preventive interventions more than simply on the outcomes of mutation tests. Women need to know more these days about the probability of survival associated with all the strategies available, and in particular whether opting for RRSO and breast MRI surveillance is likely to be as effective as undergoing both RRM and RRSO in terms of survival.