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[对乳腺癌和卵巢癌高危女性进行预防性乳房切除术:对两名携带BRCA1基因突变女性的决策过程及长期满意度的定性分析]

[Prophylactic mastectomy in women at high risk for breast and ovarian cancer: qualitative analysis of the decision making process and long-term satisfaction of two women carrying a BRCA1-mutation].

作者信息

Vodermaier Andrea, Bauerfeind Ingo, Untch Michael, Nestle-Krämling Carolin

机构信息

Klinik und Poliklinik für Frauenheilkunde und Geburtshilfe - Grosshadern, Ludwig-Maximilians-Universität München, Germany.

出版信息

Psychother Psychosom Med Psychol. 2006 Sep-Oct;56(9-10):351-61. doi: 10.1055/s-2006-940007. Epub 2006 Jun 27.

DOI:10.1055/s-2006-940007
PMID:16804803
Abstract

PURPOSE

Bilateral prophylactic mastectomy and oophorectomy are currently the most effective prevention options for female carriers of the BRCA1 or BRCA2 gene. However, especially the mastectomy procedure is very invasive and is chosen rarely among high risk women in Germany. Little is known about how women cope with this surgery and their long-term satisfaction.

METHODS

Face-to-face interviews were conducted with two BRCA1 mutation carriers, who had undergone prophylactic mastectomy in their twenties 9 and 16 years ago. The process of decision making and long-term satisfaction were analysed using Mayring's qualitative content analysis.

RESULTS

Both high risk women had a significant family history of breast and ovarian cancer. They were repeatedly confronted with uncontrollable courses of disease in their relatives who died of breast cancer between the age of 20 and 30 and left small children behind. Although both women experienced different decision making and peri- and post-operative complications, both were satisfied with the decision for prophylactic surgery and showed no regret.

DISCUSSION

Deciding to obtain genetic testing pushed women towards further decision making concerning prophylactic surgery in case they carry a mutation. Information about carrier status reduced uncertainty even if the result was adverse. Both high risk women experienced a decrease in cancer related anxiety which may have heightened tolerance for quality of life related impairments. Implications for counseling are described.

摘要

目的

双侧预防性乳房切除术和卵巢切除术是目前BRCA1或BRCA2基因女性携带者最有效的预防选择。然而,尤其是乳房切除手术具有很强的侵入性,在德国的高危女性中很少有人选择。对于女性如何应对这种手术及其长期满意度知之甚少。

方法

对两名BRCA1基因突变携带者进行了面对面访谈,她们分别在9年前和16年前的二十多岁时接受了预防性乳房切除术。使用迈林的定性内容分析法对决策过程和长期满意度进行了分析。

结果

两名高危女性都有显著的乳腺癌和卵巢癌家族史。她们多次面对亲属中无法控制的疾病进程,这些亲属在20到30岁之间死于乳腺癌,还留下了年幼的孩子。尽管两名女性经历了不同的决策过程以及围手术期和术后并发症,但她们都对预防性手术的决定感到满意,且没有后悔。

讨论

决定进行基因检测促使女性在携带突变的情况下就预防性手术做出进一步决策。即使检测结果不利,携带者状态的信息也减少了不确定性。两名高危女性都经历了与癌症相关的焦虑感下降,这可能提高了她们对生活质量相关损害的耐受性。文中描述了对咨询工作的启示。

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