Guidelines for Follow‐Up of Women at High Risk for Inherited Breast Cancer: Consensus Statement from the Biomed 2 Demonstration Programme on Inherited Breast Cancer

Abstract

Protocols for activity aiming at early diagnosis and treatment of inherited breast or breast-ovarian cancer have been reported. Available reports on outcome of such programmes are considered here. It is concluded that the ongoing activities should continue with minor modifications. Direct evidence of a survival benefit from breast and ovarian screening is not yet available. On the basis of expert opinion and preliminary results from intervention programmes indicating good detection rates for early breast cancers and 5-year survival concordant with early diagnosis, we propose that women at high risk for inherited breast cancer be offered genetic counselling, education in ‘breast awareness’ and annual mammography and clinical expert examination from around 30 years of age. Mammography every second year may be sufficient from 60 years on. BRCA1 mutation carriers may benefit from more frequent examinations and cancer risk may be reduced by oophorectomy before 40–50 years of age. We strongly advocate that all activities should be organized as multicentre studies subjected to continuous evaluation to measure the effects of the interventions on long-term mortality, to match management options more precisely to individual risks and to prepare the ground for studies on chemoprevention.

General Practitioners and Predictive Genetic Testing for Late-Onset Diseases in Flanders: What Are Their Opinions and Do They Want to Be Involved?

“…As such, this confirms the lack of consensus and/or reluctance regarding this procedure observed in previous research among GPs and other health care professionals [4, 15, 16, 17]as well as among women from breast cancer families [18, 19, 20, 21]and from the general population [4]. It also mirrors the careful position of several professional associations of medical specialists in Europe and the US [22, 23, 24]. Still, almost one third of the GPs explicitly endorsed a prophylactic mastectomy as being ‘the best method to prevent breast cancer’.…”

Predictive Genetic Testing for Breast Cancer and Huntington’s Disease: The Opinions of Midwives and Nurses in Flanders

“…This corroborates the disagreement and/or reluctance regarding this procedure found in previous studies among general practitioners and other health care professionals [8, 17, 18], as well as among women from breast cancer families [19, 20, 21]and from the general population [22]. As such, it also reflects the prudent position taken by professional associations of medical specialists in Europe and the US concerning preventive options for carriers of a HBC mutation [23, 24]. On the other hand, unambiguous support for prophylactic mastectomy in the prevention of breast cancer was reported by almost one fifth of the sample in our study – which is a somewhat smaller proportion of supportive respondents than was found in a recent study among general practitioners [8].…”

Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer

“…For breast and ovarian cancer, inclusion was based on the Biomed 2 Demonstration Program. A subject was included in the surveillance program if she had a family history of two or more first-degree relatives with early onset of breast cancer (<50 years of age), and/or multiple cases of breast cancer in the same lineage compatible with dominant inheritance in the family, and/or a combination of early onset breast cancer and ovarian cancer in the family [23]. Inclusion in the HNPCC surveillance program was based on the Amsterdam I criteria.…”