Cancer worry among BRCA1/2 pathogenic variant carriers choosing surgery to prevent tubal/ovarian cancer: course over time and associated factors

Majke H D Van Bommel ,Joanna Inthout,S.f.p.j Coppus ,Katja N Gaarenstroom,Luc Van Lonkhuijzen ,Helena C Van Doorn,José A E Custers ,Mirjam J A Apperloo,Marline G Harmsen,Nicoline Hoogerbrugge,Rosella Hermens ,Marc Van Beurden,Brigitte Slangen ,Miranda P Steenbeek,Monique M.a Brood-Van Zanten ,Marian J.e Mourits ,M Caroline Vos ,Jurgen M.j Piek ,Ronald P Zweemer,Judith B Prins,Joanne A De Hullu

doi:10.1007/s00520-021-06726-4

Abstract

ObjectiveHigh cancer risks, as applicable to BRCA1 and BRCA2 pathogenic variant (PV) carriers, can induce significant cancer concerns. We examined the degree of cancer worry and the course of this worry among BRCA1/2-PV carriers undergoing surgery to prevent ovarian cancer, and identified factors associated with high cancer worry.MethodsCancer worry was evaluated as part of the multicentre, prospective TUBA-study (NCT02321228) in which BRCA1/2-PV carriers choose either novel risk-reducing salpingectomy with delayed oophorectomy or standard risk-reducing salpingo-oophorectomy. The Cancer Worry Scale was obtained before and 3 and 12 months after surgery. Cancer worry patterns were analysed using latent class growth analysis and associated factors were identified with regression analysis.ResultsOf all 577 BRCA1/2-PV carriers, 320 (57%) had high (≥ 14) cancer worry pre-surgery, and 54% had lower worry 12 months post-surgery than pre-surgery. Based on patterns over time, BRCA1/2-PV carriers could be classified into three groups: persistently low cancer worry (56%), persistently high cancer worry (6%), and fluctuating, mostly declining, cancer worry (37%). Factors associated with persistently high cancer concerns were age below 35 (BRCA1) or 40 (BRCA2), unemployment, previous breast cancer, lower education and a more recent BRCA1/2-PV diagnosis.ConclusionsSome degree of cancer worry is considered normal, and most BRCA1/2-PV carriers have declining cancer worry after gynaecological risk-reducing surgery. However, a subset of these BRCA1/2-PV carriers has persisting major cancer concerns up to 1 year after surgery. They should be identified and potentially offered additional support.Clinical trial registrationThe TUBA-study is registered at ClinicalTrials.gov since December 11th, 2014. Registration number: NCT02321228.

Highlights

Female carriers of a pathogenic variant (PV) in breast cancer (BRCA)1 or BRCA2 gene are at high lifetime risk of developing breast and ovarian cancer [1]
All women had a mean age of 37.2 years at inclusion, and 51% carried a BRCA1-PV
Breast cancer was previously diagnosed in 14%, and 38% had undergone risk-reducing mastectomy (RRM)

Summary

Introduction

Female carriers of a pathogenic variant (PV) in breast cancer (BRCA) or BRCA2 gene are at high lifetime risk of developing breast (around 70%) and ovarian cancer (around 44% and 17% for BRCA1/2-PV carriers respectively) [1]. Extended author information available on the last page of the article cancer is typically diagnosed at an advanced-stage which contributes to the poor 5-year survival of about 45% [2, 3]. Breast cancer risk management is based on annual screening for early detection or on primary prevention by risk-reducing mastectomy (RRM) [4]. Effective screening methods for early detection are not available [5,6,7]. Risk-reducing salpingo-oophorectomy (RRSO) is advised at the age of 35–40 (BRCA1-PV) or 40–45 years (BRCA2-PV carriers) [8].

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Conclusion