The carrier clinic: an evaluation of a novel clinic dedicated to the follow-up of BRCA1 and BRCA2 carriers--implications for oncogenetics practice

Bancroft, Elizabeth; Locke, Imogen; Ardern‐Jones, Audrey; D'Mello, Lucia; McReynolds, Kate M.; Lennard, Fiona; Barbáchano, Yolanda; Barwell, Julian; Walker, Lisa; Dorkins, Huw; Cummings, Carole; Paterson, Joan; Kóte-Jarai, Zsofia; Mitra, Anita; Jhavar, Sameer; Thomas, Sarah; Houlston, Richard S.; Shanley, Susan; Eeles, Rosalind

doi:10.1136/jmg.2009.072728

Cited by 13 publications

(9 citation statements)

References 44 publications

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“…A study by Underhill and Crotser (2014) also concluded that long-term follow-up with genetics professionals may be beneficial for women after the identification of a BRCA mutation because they found that the risk management decision-making process is not static, but rather changes over time. Examples of service delivery models with genetic counseling follow up in multidisciplinary high-risk cancer clinics have been reported (Arden-Jones and Eeles 2004; Bancroft et al 2010; Engel et al 2012; Pichert et al 2010) and have been successful (Firth et al 2011; Pichert et al 2010). …”

Section: Discussionmentioning

confidence: 99%

“…A study by Metcalfe et al (2000) found that approximately one third of women with a BRCA mutation felt as though they needed a follow-up genetic counseling appointment after results disclosure. There are a few reports of multidisciplinary high-risk cancer clinics (primarily in the UK and one in the USA) that provide ongoing follow-up for individuals with a BRCA mutation with various providers such as breast surgeons, oncologists, genetic counselors, and psychologists (Arden-Jones and Eeles 2004; Bancroft et al 2010; Engel et al 2012; Firth et al 2011; Pichert et al 2010). One study from a London clinic found high satisfaction with the multidisciplinary model and suggested that it provided help in the risk management decision-making process (Firth et al 2011).…”

Section: Discussionmentioning

confidence: 99%

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Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision‐Making Process of BRCA1 and BRCA2 Mutation Carriers

Puski

Hovick

Senter

et al. 2018

Journal of Genetic Counseling

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Deciding between increased cancer screening or prophylactic surgery and the timing of such procedures can be a difficult and complex process for women with BRCA mutations. There are gaps in our understanding of involvement of others in the decision-making process for women with BRCA mutations. This study evaluated the management decision-making process of women with BRCA mutations, focusing on the involvement of others. Grounded theory was used to analyze and code risk management decision-making information from interviews with 20 BRCA mutation carriers. Unaffected at-risk participants with a BRCA mutation, those under age 40, and those with no children described having a difficult time making risk management decisions. Physicians were an integral part of the decision-making process by providing decisional support and management recommendations. Family members and other mutation carriers filled similar yet distinct roles by providing experiential information as well as decisional and emotional support for carriers. Participants described genetic counselors as short-term providers of risk information and management recommendations. The study findings suggest that unaffected at-risk women, women under 40, and those who do not have children may benefit from additional support and information during the decision-making process. Genetic counselors are well trained to help women through this process and connect them with resources, and may be under-utilized in long-term follow-up for women with a BRCA mutation.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision‐Making Process of BRCA1 and BRCA2 Mutation Carriers

Puski

Hovick

Senter

et al. 2018

Journal of Genetic Counseling

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“…However, the literature also quotes an ~5% rate of occult cancer detection, which, in cases of invasive disease, would require a potentially debilitating axillary exploration. In women with inherited cancer syndromes, the rate of occult disease incidence may be even higher .…”

Section: Discussionmentioning

confidence: 99%

Sentinel Lymph Node Biopsy for Risk-Reducing Mastectomy

et al. 2013

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Risk-reducing mastectomy (RRM) confers 90-95% decreased risk of breast cancer, and may reduce mortality, especially in high-risk groups such as BRCA carriers. Risk of occult disease in RRM specimen is ~5%. This demands axillary staging: sentinel lymph node (SLN) biopsy is no longer possible, axillary clearance confers significant risks and may prove negative. Contemporaneous SLN biopsy allows axillary staging with minimal further dissection. Women undergoing RRM and SLN biopsy between June 2005 and July 2010 were reviewed retrospectively from our prospectively maintained database of 1,522 SLN procedures in 1,498 patients. SLN(s) localized using routine tracer methods. SLNs and mastectomy specimens underwent routine histologic examination. Eighty-three RRMs with SLN biopsy were performed in 71 patients (12 bilateral). Indications for RRM: contralateral invasive (55), in situ (5) disease, BRCA 1/2 mutation (12), and strong family history (10). Mean number of SLNs: 1.35. Occult disease was detected in four cases (4.8%), with one case of occult invasive lobular carcinoma (1.2%). Remaining occult disease was lobular in situ neoplasia (LISN). SLNs were negative in all cases. Our findings are comparable to those in the literature: 4.8% rate of occult disease overall, 1.2% invasive. The significant risk with SLN biopsy is lymphoedema, quoted around 7%. We have had no reports of symptomatic lymphoedema in patients undergoing RRM and SLN biopsy. We propose that SLN at the time of mastectomy requires only limited further dissection, and confers minimal risk compared with secondary axillary surgery.

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“…This approach is typical in the United Kingdom, although our register does offer more follow-up than most clinics are able to provide. Nonetheless several clinics in the London area now offer a ‘carrier' clinic with patients invited to clinic for ongoing assessment (Bancroft et al , 2010). This highlights the potential importance of regular genetic counselling appointments regarding risk-reducing options in women who carry a BRCA1 or BRCA2 mutation, although we do not know whether uptake of BRRSO is higher in the carrier clinic centres than in those that do not use this model.…”

Section: Discussionmentioning

confidence: 99%

Uptake of risk-reducing salpingo-oophorectomy in women carrying a BRCA1 or BRCA2 mutation: evidence for lower uptake in women affected by breast cancer and older women

et al. 2011

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Background:Bilateral risk-reducing salpingo-oophorectomy (BRRSO) is the only effective way of reducing mortality from ovarian cancer. This study investigates uptake of BRRSO in 700 BRCA1/2 mutation carriers from Greater Manchester.Methods:Dates of last follow-up and BRRSO were obtained, and the following variables were investigated: ovarian cancer risk/gene, age and breast cancer history. The date of the genetic mutation report was the initiation for Kaplan–Meier analysis.Results:The uptake of BRRSO in BRCA1 mutation carriers was 54.5% (standard error 3.6%) at 5 years post testing compared with 45.5% (standard error 3.2%) in BRCA2 mutation carriers (P=0.045). The 40–59 years category showed the greatest uptake for BRRSO and uptake was significantly lower in the over 60 s (P<0.0001). Of the unaffected BRCA1 mutation carriers, 65% (standard error 5.1%) opted for surgery at 5 years post-testing compared with 41.1% (standard error 5.1%) in affected BRCA1 mutation carriers (P=0.045).Conclusion:The uptake of BRRSO is lower in women previously affected by breast cancer and in older women. As there is no efficient method for early detection of ovarian cancer, uptake should ideally be greater. Counselling should be offered to ensure BRCA1/2 mutation carriers make an informed decision about managing their ovarian cancer risk.

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The carrier clinic: an evaluation of a novel clinic dedicated to the follow-up of BRCA1 and BRCA2 carriers--implications for oncogenetics practice

Cited by 13 publications

References 44 publications

Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision‐Making Process of BRCA1 and BRCA2 Mutation Carriers

Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision‐Making Process of BRCA1 and BRCA2 Mutation Carriers

Sentinel Lymph Node Biopsy for Risk-Reducing Mastectomy

Uptake of risk-reducing salpingo-oophorectomy in women carrying a BRCA1 or BRCA2 mutation: evidence for lower uptake in women affected by breast cancer and older women

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