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Trial Lecture – time and place
See Trial Lecture.
Adjudication committee
- First opponent: Professor Karin A.W. Wadt, University of Copenhagen, Denmark
- Second opponent: Associate Professor Arvids Irmejs, Riga Stradins University, Latvia
- Third member and chair of the evaluation committee: Professor Lars Aabakken, University of Oslo
Chair of the Defence
Professor II Inger Thune, University of Oslo
Principal Supervisor
Senior Consultant Astrid Tenden Stormorken, Oslo University Hospital
Summary
Women with a hereditary cancer predisposition have a high risk of developing cancer from early adulthood. While surveillance enables early detection, cancer prevention is often only possible through surgery, such as mastectomy or hysterectomy.
This thesis investigates uptake, consequences of, experience and satisfaction with preventive surgery in women with hereditary colorectal and endometrial cancer (Lynch Syndrome (LS)), caused by pathogenic variants (PVs) in the Mis-Match Repair (MMR) genes, and in women with hereditary breast and ovarian cancer, caused by PVs in the BRCA1 and BRCA2 genes.
The study cohort consists of women with PVs in BRCA1/2 or one of the MMR-genes, registered in the Research and Quality Register for Hereditary Cancer at Oslo University Hospital. Data were collected from national health registers, medical records and through questionnaires.
LS women with hysterectomy had more challenging colonoscopies and a lower rate of completed colonoscopies compared to those with no hysterectomy. However, colonoscopy completion rate in the hysterectomy group remained high at 94.4%. LS women considering hysterectomy should therefore not be advised against it.
Nearly half of (48.8%) the BRCA1/2 carriers had undergone risk-reducing mastectomy (RRM). More BRCA1 carriers than BRCA2 carriers had chosen RRM. They also chose surgery shorter after genetic testing and at a younger age. Women tested in 2015/2016 were 2.6 times more likely to choose RRM than those tested in 2008/2009.
Having children and being a BRCA1 carrier were strongly associated with the decision to undergo RRM. Support from healthcare providers was linked to higher satisfaction with having undergone RRM, while those who struggled with the decision reported lower satisfaction.
Additional information
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