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      Longer term effects of the Angelina Jolie effect: increased risk-reducing mastectomy rates in BRCA carriers and other high-risk women

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          Abstract

          In May 2013 the actress Angelina Jolie informed the press that she had undergone bilateral risk-reducing mastectomy (BRRM) because she carried a maternally inherited pathogenic BRCA1 mutation. This decision created huge publicity worldwide [1] and led to enormous interest in hereditary breast cancer/genetic testing. Here we comment on our recently published research article in Breast Cancer Research and provide more recent observations. This reported a 2.5-fold increase in referrals of UK women with family histories of breast cancer 3–4 months following Ms Jolie’s revelation [1]. We also highlighted increased interest in BRRM; however, as it takes 9–12 months from initial BRRM enquiries to the operative procedure, we can now report a similar 2.5-fold increase in uptake of BRRM in the 6–24 months following this. The Genesis Prevention Centre Family History clinic (GPCFHC) covers an extended population of around 5 million. Although the main impact of the Angelina effect was from June to November 2013, this trend continued through 2014 with increased referrals from 201 in January–June 2012 to 388 (odds ratio (OR) 1.93) in January to June 2014 and rising by 366 (OR 2.09) for the last 6 months to give a total of 754 for 2014. Women attending for risk assessment and discussions concerning BRRM, unprompted, still mention the effects of Angelina Jolie on their attendance anecdotally to clinic physicians and still reflect on the impact of her speaking publicly in their pre-surgery consultations with the clinical psychologist in 2015. A clear upward trend in BRRM can be seen starting around 6 months after the news announcement in May 2013 (Fig. 1). The number of high-risk women without BRCA1/2 mutations undergoing BRRM (n = 12; 18 months from January 2011) rose to 52 (18 months from January 2014). The number in mutation carriers rose from 17 to 31. The overall combined rise from 29 BRRMs to 83 was significant (high-risk women at GPCFHC, n = 2012; chi-square p < 0.0001). Again BRRM numbers annually had been stable at around 20 (2000–2011). We speculate that the BRRM rate rise was probably contributed by the ‘Angelina effect’. This effect was seen not just in carriers of BRCA1/BRCA2, but was actually greater in those without mutations. Nonetheless, 23/31(74 %) BRRMs in mutation carriers were in women >18 months after testing positive, indicating a delay in decision-making, whereas prior to 2013 the majority of women had BRRM within 18 months of testing positive [2]. There was a slight rise in the number of unaffected women newly testing positive for BRCA1/2 in Manchester from 81 to 116 in the 2 years before and the 2 years after Angelina’s announcement, although this could have been impacted by new National Institute for Health and Care Excellence (NICE) guidelines announced in June 2013 [3]. This research was exempt from ethical approval as this is an audit of clinical service and does not contain identifiable data. Fig. 1 Number of BRRMs carried out at Wythenshawe and Christie hospitals per 6-month period from 2011 and proportion with mutations in high-risk genes. a January–June, b July–December, red proportion with BRCA1/2/TP53 mutations, BRRM bilateral risk-reducing mastectomy The present audit of further new referrals and BRRM rates indicates that the Angelina effect has been prolonged and has impacted on increased referral and BRRM rates. It would be interesting to see results from centres worldwide. Plans to offer breast cancer risk assessment on a population basis could further affect uptake of BRRM [4]. It is also possible that similar effects will be seen on the already increasing rates of contralateral mastectomy in women with breast cancer [5].

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          The Angelina Jolie effect: how high celebrity profile can have a major impact on provision of cancer related services

          Introduction It is frequent for news items to lead to a short lived temporary increase in interest in a particular health related service, however it is rare for this to have a long lasting effect. In 2013, in the UK in particular, there has been unprecedented publicity in hereditary breast cancer, with Angelina Jolie’s decision to have genetic testing for the BRCA1 gene and subsequently undergo risk reducing mastectomy (RRM), and a pre-release of the NICE guidelines on familial breast cancer in January and their final release on 26th June. The release of NICE guidelines created a lot of publicity over the potential for use of chemoprevention using tamoxifen or raloxifene. However, the longest lasting news story was the release of details of film actress Angelina Jolie’s genetic test and surgery. Methods To assess the potential effects of the ‘Angelina Jolie’ effect, referral data specific to breast cancer family history was obtained from around the UK for the years 2012 and 2013. A consortium of over 30 breast cancer family history clinics that have contributed to two research studies on early breast surveillance were asked to participate as well as 10 genetics centres. Monthly referrals to each service were collated and increases from 2012 to 2013 assessed. Results Data from 12 family history clinics and 9 regional genetics services showed a rise in referrals from May 2013 onwards. Referrals were nearly 2.5 fold in June and July 2013 from 1,981 (2012) to 4,847 (2013) and remained at around two-fold to October 2013. Demand for BRCA1/2 testing almost doubled and there were also many more enquiries for risk reducing mastectomy. Internal review shows that there was no increase in inappropriate referrals. Conclusions The Angelina Jolie effect has been long lasting and global, and appears to have increased referrals to centres appropriately.
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            Uptake of risk-reducing surgery in unaffected women at high risk of breast and ovarian cancer is risk, age, and time dependent.

            The uptake of risk-reducing surgery in women at increased risk of breast and ovarian cancer is highly variable between countries and centers within countries. We have investigated the rate, timing, and age of uptake of surgery in the northwest of England to report the results after up to 7 years in a Regional Genetics center. Uptake was documented in 211 known unaffected BRCA1/2 mutation carriers from 509 families and in 3,515 women at >25% lifetime risk of breast cancer without known mutations. Of the 211 mutation carriers, 40% opted for bilateral risk-reducing mastectomy (BRRM) and 45% underwent bilateral risk-reducing salpingo-oophorectomy (BRRSPO). Uptake of BRRM was significantly related to lifetime risk and age but continued over several years. In women not known to carry a BRCA mutation, 6.4% of women at 40% to 45% lifetime risk, 2.5% of women at 33% to 39% lifetime risk, and 1.8% of women at 25% to 32% lifetime risk underwent BRRM (P < 0.005). BRRSPO uptake was greater in BRCA1 (52%) than BRCA2 (28%) carriers but in both groups tended to occur within the first 2 years after gene test (except in the youngest age group) and in women between the ages of 35 and 45. To truly assess the uptake of risk-reducing surgery, longer-term follow-up is necessary particularly in younger women who are likely to delay BRRSPO. Careful risk counseling does seem to influence women's decisions for surgery, although the effect is not immediate.
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              Familial breast cancer: summary of updated NICE guidance

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                Author and article information

                Contributors
                00 44 (0)161 276 6206 , gareth.evans@cmft.nhs.uk
                julie.wisely@mhsc.nhs.uk
                Tara.Clancy@cmft.nhs.uk
                Fiona.Lalloo@cmft.nhs.uk
                Mary.wilson@uhsm.nhs.uk
                Richard.Johnson@UHSM.NHS.UK
                Jonathan.Duncan@UHSM.NHS.UK
                Lester.Barr@UHSM.NHS.UK
                Ashu.Gandhi@UHSM.NHS.UK
                Tony.Howell@ics.manchester.ac.uk
                Journal
                Breast Cancer Res
                Breast Cancer Res
                Breast Cancer Research : BCR
                BioMed Central (London )
                1465-5411
                1465-542X
                25 November 2015
                25 November 2015
                2015
                : 17
                : 143
                Affiliations
                [ ]Genesis Breast Cancer Prevention Centre, University Hospital of South Manchester NHS Trust, Wythenshawe, Manchester, M23 9LT UK
                [ ]Genomic Medicine, St. Mary’s Hospital, Manchester Academic Health Science Centre, Institute of Human Development, Central Manchester Foundation Trust, Oxford Road, Manchester, M13 9WL UK
                [ ]Department of Psychology, University Hospital of South Manchester NHS Trust, Wythenshawe, Manchester M23 9LT UK
                [ ]Nightingale Breast Screening Centre, University Hospital of South Manchester NHS Trust, Wythenshawe, Manchester M23 9LT UK
                [ ]Department of Breast Surgery, University Hospital of South Manchester NHS Trust, Wythenshawe, Manchester M23 9LT UK
                [ ]Department of Plastic Surgery, University Hospital of South Manchester NHS Trust, Wythenshawe, Manchester M23 9LT UK
                Author information
                http://orcid.org/0000-0002-8482-5784
                Article
                650
                10.1186/s13058-015-0650-8
                4659163
                26603733
                40b95a49-fab9-42e4-ab39-835a6049d3ec
                © Evans et al. 2015

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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                Oncology & Radiotherapy
                Oncology & Radiotherapy

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