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Lymphedema: experience of a cohort of women with breast cancer followed for 4 years after diagnosis in Victoria, Australia

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Abstract

Purpose

The aim of this work was to study the incidence and prevalence of self-reported lymphedema in breast cancer survivors between 2 and 4 years following diagnosis, the factors associated with the development of lymphedema and the impact of lymphedema on psychological well-being.

Methods

We assessed self-reported lymphedema in the BUPA Health Foundation Health and Wellbeing After Breast Cancer Study, a questionnaire-based study of 1,683 women newly diagnosed with their first episode of invasive breast cancer in Victoria, Australia. Psychological well-being was assessed using the Psychological General Well-being Index.

Results

Two years after diagnosis, nearly 20 % of women reported lymphedema and this proportion remained above 18 % 2 years later. However, self-reported lymphedema was a dynamic phenomenon, with the condition resolving in some women and others reporting onset for the first time up to 4 years from diagnosis. Lymphedema 2 years from diagnosis was positively associated with the number of nodes removed at initial surgery, although this variable only explained a small proportion of the likelihood of reporting lymphedema. The presence of lymphedema was associated with lower psychological general well-being.

Conclusions

Lymphedema after breast cancer treatment frequently has a dynamic pattern and may emerge as an issue for women several years after their initial treatment. It is associated with a lower level of general well-being.

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Acknowledgments

The authors wish to thank the study participants and the members of our Study Advisory Group: Dr Jacquie Chirgwin, A/Professor John Collins, Professor Graham Giles, Mr Peter Gregory, Mr Stewart Hart, Ms Suzanne Neil and Mrs Avis McPhee. The authors also wish to thank the members of the research team of the Health and Wellbeing After Breast Cancer study, without whose hard work this large cohort study would not be possible (Maria La China and Jo Bradbury). Finally, we thank Ms Helen Farrugia, Director of Information Systems and Professor Graham Giles, Director, of the Victorian Cancer Registry, for their ongoing support of this study.

Funding sources

This work was supported by the BUPA Health Foundation (previously the Medical Benefits Fund of Australia Limited Foundation) (to SRD and RJB), the National Health and Medical Research Council of Australia (grant nos. 219279 to SRD and RJB, 490938 to SRD), Novartis Oncology Australia, the L.E.W. Carty Trust, the Jack and Robert Smorgon Families Foundation and Connie and Craig Kimberley and Roy Morgan Research (all to SRD and RJB). This research project was also supported by the Victorian Government through a Victorian Cancer Agency Research Fellowship (to RJB).

Conflict of interest

None of the authors consider that they have any conflict of interest that could inappropriately influence or bias this work. None of the funding agencies had any role in determining study design; in the collection, analysis and interpretation of data; and in the writing of the manuscript or in the decision to submit the manuscript for publication.

Ethical approval

The study is being carried out with the approval of the Ethics Committee of the Cancer Council of Victoria and the Human Ethics Committee of Monash University and all participants have provided written informed consent.

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Correspondence to Robin J. Bell.

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Bell, R.J., Robinson, P.J., Barallon, R. et al. Lymphedema: experience of a cohort of women with breast cancer followed for 4 years after diagnosis in Victoria, Australia. Support Care Cancer 21, 2017–2024 (2013). https://doi.org/10.1007/s00520-013-1763-1

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  • DOI: https://doi.org/10.1007/s00520-013-1763-1

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