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How Cancer Has Affected Post-Treatment Survivors: A LIVESTRONG Report
In the United States, the number of cancer survivors has more than tripled to 12 million people during the past 30 years. As the number of survivors has dramatically increased, so has the need for reliable information about the post-treatment cancer experience. To comprehensively assess the physical, practical and emotional needs of cancer survivors, LIVESTRONG launched a survey in 2006.
Created in collaboration with cancer survivors, the LIVESTRONG Survey for Post-Treatment Cancer Survivors (LIVESTRONG Survey) was conducted to contribute to the understanding of survivors’ needs after completion of treatment. The survey instrument was divided into five sections which covered 1) physical concerns, 2) emotional concerns, 3) practical concerns, 4) positive experiences with cancer and 5) resources and information provided by LIVESTRONG. The extensive list of concerns included items related to late effects of cancer and its treatment such as lymphedema, fatigue, sadness and depression and issues with insurance.
The survey results show that almost all respondents (99 percent) experienced at least one concern after cancer treatment ended. Almost all experienced at least one physical concern (91 percent) and/or at least one emotional concern (96 percent). The majority of respondents (75 percent) also experienced practical concerns. For those experiencing emotional concerns, 55 percent received help for one or more concern; for those experiencing practical concerns, a minority—40 percent— received help for one or more concern; and for those experiencing physical concerns, 75 percent indicated that they received care for one or more concern. However, for the four areas most frequently reported as physical concerns—energy, concentration, sexual functioning and neuropathy—the majority of respondents had not received care.
The primary reason reported by individuals for not receiving help across all concerns was that they had learned to live with a concern on their own. The fact that many respondents chose to live with a concern in lieu of receiving help highlights the critical need for more support during the post-treatment cancer survivorship experience. For these post-treatment survivors, emotional and practical concerns were the areas where post-treatment support was most needed. As one respondent noted, “The emotional effects were often harder than the physical ones for me, and this is where I felt the most lost and alone.”
The results from this survey are derived from 2,307 cancer survivors who voluntarily participated in this primarily online survey. Of these, 85 percent were under the age of 55 when they were diagnosed. Further, the majority of respondents were white (92 percent), female (67 percent),
one to five years post-treatment (61 percent) and college graduates (59 percent). Since the survey was administered almost entirely online, it can be assumed that most respondents were Internet savvy as well. While the results of this survey may not represent the experiences of all post-treatment cancer survivors due to the voluntary nature of the survey, the findings can make an important contribution to the scientific understanding of the needs of post-treatment cancer survivors, particularly for describing the experiences of adult survivors under the age of 55.
Due to advances in prevention, detection and treatment, people diagnosed with cancer are much more likely to survive at least five years. While this is exciting news, it is important for the cancer community to consider how we can best support people with the multifaceted experience of surviving cancer. Cancer survivors need research, information and access to services to help address their physical, emotional and practical concerns after treatment ends.