Hvordan oplever kvinder med BRCA-mutation deres seksualitet efter profylaktisk kirurgi

Abstract

Baggrund: At være bærer af arvelig brystcancer (BRCA) genmutation giver øget risiko for udvikling af bryst- og æggestokkræft, og er en stor psykisk belastning. Valget om profylaktisk kirurgi er ofte komplekst og konsekvenserne kan være svære at overskue for den enkelte. Seksualitet er et vigtigt aspekt af menneskets liv og kan danne grundlag for trivsel. Seksualitet rummer, i den senmoderne verden, flere dimensioner, som kan påvirke hinanden. Eksisterende litteratur peger på, at den profylaktiske kirurgi kan give seksuelle udfordringer, men der er sparsomt med viden om i hvor høj grad og hvordan kvinderne oplever, at deres seksualitet bliver påvirket. Formål: Formålet med studiet var at frembringe viden om, hvordan raske kvinder med BRCA-mutation oplevede, at den profylaktiske kirurgi påvirkede deres seksualitet. Metode: Studiet tager afsæt i den kvalitative forskningsmetode. Som dataindsamlingsmetode er der anvendt semistrukturerede interview. I alt seks kvinder deltog i studiet. Alle seks kvinder havde undergået profylaktisk kirurgi som følge af deres BRCA-mutation. Resultat: Fundene i interviewstudiet viser at alle seks kvinder har fået påvirket deres seksualitet. Studiet fandt, at kvinderne oplevede nedsat lyst, nedsat lubrikation, ændring i ophidselse og orgasme og nedsat sensibilitet i deres bryster, samt påvirket kropsopfattelse. Studiets fund viste også, at den profylaktiske kirurgi havde medvirket til en ny rollefordeling for flere af parrene, ligesom flere af kvinderne efter den profylaktiske kirurgi kun indgik i uformelle seksuelle relationer. Ligeledes viste studiet, at de kvinder, der endnu ikke var i menopause forud for den profylaktiske kirurgi, oplevede den pludselig indsættende menopause som meget voldsom og som noget de var uforberedte på. Desuden fandt studiet frem til, at flere af kvinderne oplevede en sorg over tabet af deres fertilitet. En positiv indstilling viste sig at medvirke til øget mestring samt en følelse af empowerment. Konklusion: Det konkluderes, at det at få foretaget profylaktisk kirurgi på baggrund af en BRCA-mutation påvirker seksualiteten på flere bio-psyko-sociale parametre enten positivt eller negativt. Emneord: Seksualitet, BRCA-gen, BRCA-Mutation, profylaktisk kirurgi, mestring, oplevelse, Brystkræft, Æggestokkræft, BRCA1, BRCA2

Background: Being a carrier of hereditary breast cancer (BRCA) gene mutation increases the risk of developing breast and ovarian cancer, and is a major psychological burden. To undergo prophylactic surgery is often a complex choice, and the consequences can be difficult for the individual woman to understand. Sexuality is seen as an important aspect of human life and can form the basis of well-being. Late modernity contains several dimensions of sexuality, which all influence each other. Existing literature indicates that prophylactic surgery can cause sexual challenges, but there is limited knowledge about the extent and how women experience the effect on their sexuality. Purpose: The purpose of the study was to generate knowledge about how healthy woman with BRCA-mutation experienced how the prophylactic surgery affected their sexuality. Method: The study is based on the qualitative research method. As a data collection method, semi-structured interviews have been used. A total of 6 women participated in the study. All 6 women had undergone prophylactic surgery as a result of their BRCA mutation. Result: The findings show that all of the 6 women experienced their sexuality affected after the prophylactic surgery. The study found that the women experienced a decrease in their desire, decreased lubrication, decreased orgasm and decreased sensitivity in their breasts, as well as an affected body image. The study also found, that the prophylactic surgery had contributed to a new distribution of roles for several of the couples, just as several of the women were now only involved in informal sexual relations. The study also showed that the women who were not yet in menopause prior to the prophylactic surgery experienced the sudden onset of menopause as something they were not prepared for. In addition, the study found that several of the women experienced grief over the loss of their fertility. To have a positive attitude was found to contribute to increased coping and a feeling of empowerment of the women in this study. Conclusion: It is concluded in this project, that the undergoing of prophylactic surgery due to the BRCA-mutation gene affects sexuality either positively or negatively in several bio-psycho-social factors. Subject heading: Sexuality, BRCA-gene, BRCA-mutation, prophylactic surgery, Coping, Experience, Breastcancer, Ovarian Cancer, BRCA1, BRCA2

A master programme thesis from Aalborg University

Hvordan oplever kvinder med BRCA-mutation deres seksualitet efter profylaktisk kirurgi - Et semistruktureret interviewstudie

[How do women with a BRCA mutation experience their sexuality after prophylactic surgery - A semi-structured interview study]