Ferlay JEM, Lam F, Laversanne M, Colombet M, Mery L, Piñeros M, Znaor A, Soerjomataram I, Bray F. Global Cancer Observatory: Cancer Today. Lyon: International Agency for Research on Cancer; 2024. Available from: https://gco.iarc.who.int/today.

Rojas K, Stuckey A. Breast Cancer epidemiology and risk factors. Clin Obstet Gynecol. 2016;59(4):651–72.

Article  PubMed  Google Scholar 

Kuchenbaecker KB, Hopper JL, Barnes DR, Phillips KA, Mooij TM, Roos-Blom MJ, et al. Risks of breast, ovarian, and contralateral breast Cancer for BRCA1 and BRCA2 mutation carriers. JAMA. 2017;317(23):2402–16.

Article  CAS  PubMed  Google Scholar 

Li S, Silvestri V, Leslie G, Rebbeck TR, Neuhausen SL, Hopper JL, et al. Cancer risks associated with BRCA1 and BRCA2 pathogenic variants. J Clin Oncol. 2022;40(14):1529–41.

Article  PubMed  PubMed Central  Google Scholar 

Abdelwahab Yousef AJ. Male breast cancer: epidemiology and risk factors. Semin Oncol. 2017;44(4):267–72.

Article  PubMed  Google Scholar 

Dorval M, Maunsell E, Dugas MJ, Simard J. Support groups for people carrying a BRCA mutation. CMAJ. 2001;165(6):740. author reply, 2.

CAS  PubMed  PubMed Central  Google Scholar 

Wagner TM, Moslinger R, Langbauer G, Ahner R, Fleischmann E, Auterith A, et al. Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Austrian hereditary breast and ovarian Cancer group. Br J Cancer. 2000;82(7):1249–53.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Smith AW, Dougall AL, Posluszny DM, Somers TJ, Rubinstein WS, Baum A. Psychological distress and quality of life associated with genetic testing for breast cancer risk. Psychooncology. 2008;17(8):767–73.

Article  PubMed  Google Scholar 

Boghosian T, McCuaig JM, Carlsson L, Metcalfe KA. Psychosocial interventions for women with a BRCA1 or BRCA2 mutation: A scoping review. Cancers (Basel). 2021;13(7):1486.

Caruso A, Vigna C, Gremigni P. The Cancer worry scale revised for breast Cancer genetic counseling. Cancer Nurs. 2018;41(4):311–9.

Article  PubMed  Google Scholar 

Schwartz MD, Peshkin BN, Hughes C, Main D, Isaacs C, Lerman C. Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. J Clin Oncol. 2002;20(2):514–20.

Article  PubMed  Google Scholar 

Mariline G, Harmsen RPMGH, Prins JB, Hoogerbrugge N, de Hullu JA. How medical choices influence quality of life of women carrying a BRCA mutation. Elsevier. 2015(3):555–68.

Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A. Psychological side effects of breast cancer screening. Health Psychol. 1991;10(4):259–67.

Article  CAS  PubMed  Google Scholar 

Douma KF, Aaronson NK, Vasen HF, Gerritsma MA, Gundy CM, Janssen EP, et al. Psychological distress and use of psychosocial support in Familial adenomatous polyposis. Psychooncology. 2010;19(3):289–98.

Article  PubMed  Google Scholar 

Custers JA, van den Berg SW, van Laarhoven HW, Bleiker EM, Gielissen MF, Prins JB. The Cancer worry scale: detecting fear of recurrence in breast cancer survivors. Cancer Nurs. 2014;37(1):E44–50.

Article  PubMed  Google Scholar 

Timur Tashan S, Ucar T, Aksoy Derya Y, Nacar G, Erci B. Validity and reliability of the Turkish version of the modified breast Cancer worry scale. Iran J Public Health. 2018;47(11):1681–7.

PubMed  PubMed Central  Google Scholar 

Martin-Sanchez JC, Cleries R, Lidon C, Gonzalez-de Paz L, Lunet N, Martinez-Sanchez JM. Bayesian prediction of lung and breast cancer mortality among women in Spain (2014–2020). Cancer Epidemiol. 2016;43:22–9.

Article  PubMed  Google Scholar 

van Bommel MHD, Steenbeek MP, IntHout J, Hermens R, Hoogerbrugge N, Harmsen MG, et al. Cancer worry among BRCA1/2 pathogenic variant carriers choosing surgery to prevent tubal/ovarian cancer: course over time and associated factors. Support Care Cancer. 2022;30(4):3409–18.

Article  PubMed  PubMed Central  Google Scholar 

Vodermaier A. Prophylaktische Chirurgie bei Brust- und Eierstockkrebsrisiko aus psychologischer Perspektive. 2005.

Koller M, Aaronson NK, Blazeby J, Bottomley A, Dewolf L, Fayers P, et al. Translation procedures for standardised quality of life questionnaires: the European organisation for research and treatment of Cancer (EORTC) approach. Eur J Cancer. 2007;43(12):1810–20.

Article  PubMed  Google Scholar 

Sperber AD. Translation and validation of study instruments for cross-cultural research. Gastroenterology. 2004;126(1 Suppl 1):S124–8.

Article  PubMed  Google Scholar 

Thabane L, Ma J, Chu R, Cheng J, Ismaila A, Rios LP, et al. A tutorial on pilot studies: the what, why and how. BMC Med Res Methodol. 2010;10:1.

Article  PubMed  PubMed Central  Google Scholar 

Sim J, Lewis M. The size of a pilot study for a clinical trial should be calculated in relation to considerations of precision and efficiency. J Clin Epidemiol. 2012;65(3):301–8.

Article  PubMed  Google Scholar 

Finch A, Metcalfe K, Lui J, Springate C, Demsky R, Armel S, et al. Breast and ovarian cancer risk perception after prophylactic salpingo-oophorectomy due to an inherited mutation in the BRCA1 or BRCA2 gene. Clin Genet. 2009;75(3):220–4.

Article  CAS  PubMed  Google Scholar 

Overbeek KA, Cahen DL, Kamps A, Konings I, Harinck F, Kuenen MA, et al. Patient-reported burden of intensified surveillance and surgery in high-risk individuals under pancreatic cancer surveillance. Fam Cancer. 2020;19(3):247–58.

Article  PubMed  PubMed Central  Google Scholar 

Dick J, Tüchler A, Brédart A, Vitinius F, Wassermann K, Rhiem K, et al. Psychological factors and the uptake of preventative measures in BRCA1/2 pathogenic variant carriers: results of a prospective cohort study. Hereditary Cancer Clin Pract. 2022;20(1):38.

Article  CAS  Google Scholar 

Finch A, Metcalfe KA, Chiang J, Elit L, McLaughlin J, Springate C, et al. The impact of prophylactic salpingo-oophorectomy on quality of life and psychological distress in women with a BRCA mutation. Psychooncology. 2013;22(1):212–9.

Article  PubMed  Google Scholar 

Graves KD, Vegella P, Poggi EA, Peshkin BN, Tong A, Isaacs C, et al. Long-term psychosocial outcomes of BRCA1/BRCA2 testing: differences across affected status and risk-reducing surgery choice. Cancer Epidemiol Biomarkers Prev. 2012;21(3):445–55.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Metcalfe KA, Price MA, Mansfield C, Hallett DC, Lindeman GJ, Fairchild A, et al. Predictors of long-term cancer-related distress among female BRCA1 and BRCA2 mutation carriers without a cancer diagnosis: an international analysis. Br J Cancer. 2020;123(2):268–74.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Rebbeck TR, Lynch HT, Neuhausen SL, Narod SA, Van’t Veer L, Garber JE, et al. Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med. 2002;346(21):1616–22.

Article  PubMed  Google Scholar 

Metcalfe KA, Birenbaum-Carmeli D, Lubinski J, Gronwald J, Lynch H, Moller P, et al. International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers. Int J Cancer. 2008;122(9):2017–22.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Collins IM, Milne RL, Weideman PC, McLachlan SA, Friedlander ML, Hopper JL, et al. Preventing breast and ovarian cancers in high-risk BRCA1 and BRCA2 mutation carriers. Med J Aust. 2013;199(10):680–3.

Article  PubMed  Google Scholar 

Metcalfe K, et al. Prophylactic mastectomy and risk-reducing surgery in BRCA1 and BRCA2 mutation carriers: A systematic review. J Clin Oncol. 2014;32(34):3734–40.

Rebbeck TR, et al. Survival estimates following bilateral prophylactic mastectomy in BRCA1 and BRCA2 mutation carriers. JAMA. 2004;290(6):1309–16.

Google Scholar 

Choi E, Lee YY, Yoon HJ, Lee S, Suh M, Park B, et al. Relationship between Cancer worry and stages of adoption for breast Cancer screening among Korean women. PLoS ONE. 2015;10(7):e0132351.

Article  PubMed  PubMed Central  Google Scholar 

Janz NK, Hawley ST, Mujahid MS, Griggs JJ, Alderman A, Hamilton AS, et al. Correlates of worry about recurrence in a multiethnic population-based sample of women with breast cancer. Cancer. 2011;117(9):1827–36.

Article  PubMed  Google Scholar 

McAllister MF, Evans DG, Ormiston W, Daly P. Men in breast cancer families: a preliminary qualitative study of awareness and experience. J Med Genet. 1998;35(9):739–44.

Article