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*, Miranda P. Steenbeek, Joanna IntHout, Rosella P.M.G. Hermens, Nicoline Hoogerbrugge, Marline G. Harmsen, Helena C. van Doorn, Marian J.E. Mourits, Marc van Beurden, Ronald P. Zweemer, Katja N. Gaarenstroom, Brigitte F.M. Slangen, Monique M.A. Brood-van Zanten, M. Caroline Vos, Jurgen M. Piek, Luc R.C.W. van Lonkhuijzen, Mirjam J.A. Apperloo, Sjors F.P.J. Coppus, Judith B. Prins, José A.E. CustersJoanne A. de Hullu

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Objective: High 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. Methods: Cancer 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. Results: Of 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. Conclusions: Some 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 registration: The TUBA-study is registered at since December 11th, 2014. Registration number: NCT02321228.

Original languageEnglish
Pages (from-to)3409-3418
Number of pages10
JournalSupportive Care in Cancer
Issue number4
Publication statusPublished - Apr 2022

Bibliographical note

Funding Information:
The TUBA-study was funded by the Dutch Cancer Society, grant KUN 2014-7187.

Funding Information:
We gratefully thank all participating BRCA1/2 -PV carriers for their effort. Also, we thank D?sir?e Hairwassers, representing Oncogen (subdivision for hereditary breast and ovarian cancer of the Dutch Breast Cancer Association), for her input on the paper.

Publisher Copyright:
© 2021, The Author(s).


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