Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study Iris van Oostrom, Hanne Meijers-Heijboer, Litanja N. Lodder, Hugo J. Duivenvoorden, Arthur R. van Gool, Caroline Seynaeve, Conny A. van der Meer, Jan G.M. Klijn, Bert N. van Geel, Curt W. Burger, Juriy W. Wladimiroff, Aad Tibben From the Departments of Clinical Genetics, Medical Psychology and Psychotherapy, Medical Oncology, Surgical Oncology, Gynecology and Psychiatry, Erasmus MC, Rotterdam; Center of Human and Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands. Address reprint requests to Iris van Oostrom, MA, Department of Medical Psychology and Psychotherapy, Erasmus MC Rotterdam, PO Box 1738, 3000 DR Rotterdam, the Netherlands; e-mail: i.vanoostrom@erasmusmc.nl. Purpose: To explore long-term psychosocial consequences of carrying a BRCA1/2 mutation and to identify possible risk factors for long-term psychological distress. Patients and Methods: Five years after genetic test disclosure, 65 female participants (23 carriers, 42 noncarriers) of our psychological follow-up study completed a questionnaire and 51 participants were interviewed. We assessed general and hereditary cancer-related distress, risk perception, openness to discuss the test result with relatives, body image and sexual functioning. Results: Carriers did not differ from noncarriers on several distress measures and both groups showed a significant increase in anxiety and depression from 1 to 5 years follow-up. Carriers having undergone prophylactic surgery (21 of 23 carriers) had a less favorable body image than noncarriers and 70% reported changes in the sexual relationship. A major psychological benefit of prophylactic surgery was a reduction in the fear of developing cancer. Predictors of long-term distress were hereditary cancer-related distress at blood sampling, having young children, and having lost a relative to breast/ovarian cancer. Long-term distress was also associated with less open communication about the test result within the family, changes in relationships with relatives, doubting about the validity of the test result, and higher risk perception. Conclusion: Our findings support the emerging consensus that genetic predisposition testing for BRCA1/2 does not pose major mental health risks, but our findings also show that the impact of prophylactic surgery on aspects such as body image and sexuality should not be underestimated, and that some women are at risk for high distress, and as a result, need more attentive care. Journal of Clinical Oncology, Vol 21, Issue 20 (October), 2003: 3867-3874 Ann's NOTE: I had the first mastectomy in 1995 followed by a second less than a year later. Although I have no reason to believe I am a carrier of these mutations, the circumstances of my continuing disease compelled me to go forward with these surgeries. Like many women, I experienced continuing anger and distress. There were many days, for many years, when I was so unhappy over the loss of my beautiful breasts. It is not an easy decision. (I never felt, personally, that reconstruction would help, but it is a totally personal choice). Now, writing this 7 years later, I still have moments when I really miss my breasts. But I have gotten used to my 'new' look. My partner likes it and compliments me on my "gorgeous" body. I am not offended by such a statement as I might have been in the past. I used to joke that like Groucho Marx, I did not want to be in the club that accepted me. Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.