The Impact of Thyroid Cancer and Post-Surgical Radioactive Iodine Treatment on the Lives of Thyroid Cancer Survivors: A Qualitative Study Anna M. Sawka 1,2 *, David P. Goldstein 3,4 , James D. Brierley 5,6 , Richard W. Tsang 5,6 , Lorne Rotstein 7,8 , Shereen Ezzat 1,9,10,11 , Sharon Straus 12 , Susan R. George 1,2 , Susan Abbey 13 , Gary Rodin 11,14 , Mary Ann O’Brien 15 , Amiram Gafni 16,17 , Lehana Thabane 16,18 , Jeannette Goguen 1,19 , Asima Naeem 2 , Lilian Magalhaes 20 1 Division of Endocrinology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada, 2 Division of Endocrinology, Department of Medicine, University Health Network, Toronto, Ontario, Canada, 3 Department of Otolaryngology Head and Neck Surgery, University of Toronto, Toronto, Ontario, Canada, 4 Department of Otolaryngology Head and Neck Surgery, University Health Network, Toronto, Ontario, Canada, 5 Department of Radiation Oncology, University of Toronto, Toronto, Ontario, Canada, 6 Department of Radiation Oncology, University Health Network, Toronto, Ontario, Canada, 7 Department of Surgery, University of Toronto, Toronto, Ontario, Canada, 8 Department of Surgery, University Health Network, Toronto, Ontario, Canada, 9 Division of Endocrinology, Department of Medicine, Mount Sinai Hospital, Toronto, Ontario, Canada, 10 The Freeman Centre for Endocrine Oncology, Toronto, Ontario, Canada, 11 The Ontario Cancer Institute, Toronto, Ontario, Canada, 12 Department of Knowledge Translation, University of Toronto, Toronto, Ontario, Canada, 13 Department of Psychiatry, University of Toronto and University Health Network, Toronto, Ontario, Canada, 14 Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada, 15 Supportive Cancer Care Research Unit, McMaster University and Juravinski Cancer Centre, Hamilton, Ontario, Canada, 16 Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada, 17 Centre for Health Economics and Policy Evaluation, McMaster University, Hamilton, Ontario, Canada, 18 Centre for Evaluation of Medicines, St. Joseph’s Healthcare, Hamilton, Ontario, Canada, 19 Division of Endocrinology, Department of Medicine, St. Michael’s Hospital, Toronto, Ontario, Canada, 20 School of Occupational Therapy, University of Western Ontario, London, Ontario, Canada Abstract Background: Adjuvant treatment with radioactive iodine (RAI) is often considered in the treatment of well-differentiated thyroid carcinoma (WDTC). We explored the recollections of thyroid cancer survivors on the diagnosis of WDTC, adjuvant radioactive iodine (RAI) treatment, and decision-making related to RAI treatment. Participants provided recommendations for healthcare providers on counseling future patients on adjuvant RAI treatment. Methods: We conducted three focus group sessions, including WDTC survivors recruited from two Canadian academic hospitals. Participants had a prior history of WDTC that was completely resected at primary surgery and had been offered adjuvant RAI treatment. Open-ended questions were used to generate discussion in the groups. Saturation of major themes was achieved among the groups. Findings: There were 16 participants in the study, twelve of whom were women (75%). All but one participant had received RAI treatment (94%). Participants reported that a thyroid cancer diagnosis was life-changing, resulting in feelings of fear and uncertainty. Some participants felt dismissed as not having a serious disease. Some participants reported receiving conflicting messages from healthcare providers on the appropriateness of adjuvant RAI treatment or insufficient information. If RAI-related side effects occurred, their presence was not legitimized by some healthcare providers. Conclusions: The diagnosis and treatment of thyroid cancer significantly impacts the lives of survivors. Fear and uncertainty related to a cancer diagnosis, feelings of the diagnosis being dismissed as not serious, conflicting messages about adjuvant RAI treatment, and treatment-related side effects, have been raised as important concerns by thyroid cancer survivors. Citation: Sawka AM, Goldstein DP, Brierley JD, Tsang RW, Rotstein L, et al. (2009) The Impact of Thyroid Cancer and Post-Surgical Radioactive Iodine Treatment on the Lives of Thyroid Cancer Survivors: A Qualitative Study. PLoS ONE 4(1): e4191. doi:10.1371/journal.pone.0004191 Editor: Michael Goodyear, Dalhousie University, Canada Received August 1, 2008; Accepted December 10, 2008; Published January 14, 2009 Copyright: ß 2009 Sawka et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Funding: A. Sawka and this project are supported by the Canadian Institutes of Health Research New Investigator Program (CNI-80701). This study is also supported in part by the University Health Network Thyroid Research Centre Endowment Fund and the Connaught New Staff Matching Grant of the University of Toronto. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing Interests: The authors have declared that no competing interests exist. * E-mail: sawkaam@yahoo.com Introduction The incidence of thyroid cancer is rising in Canada [1] and the United States [2–4]. In the United States, the incidence of thyroid cancer has increased from 3.6 per 100,000 persons in 1973 to 8.7 per 1000,000 in 2002, representing a 2.4-fold increase [3]. Also, in the United Kingdom, age-standardised incidence rates for thyroid cancer have nearly doubled from 1.4 to 2.6 per 100,000 persons between 1975 and 2005 [5]. The case fatality rate of thyroid cancer is low, as the annual number of deaths due to thyroid cancer is approximately 5% of the annual number of newly diagnosed cases in the United States [2]. Recent major and PLoS ONE | www.plosone.org 1 January 2009 | Volume 4 | Issue 1 | e4191