Living post treatment: definitions of those with history and no history of cancer

Introduction: Breast cancer is the leading cause of cancer, and the second leading cause of cancer death in women. Due to advances in medicine, the 10 year survival rate is 80%, resulting in a large and growing number of breast cancer survivors. Definitions of cancer survivorship from a number of professional organizations and researchers vary, but the research is scant on the meaning of cancer survivorship to people with and without a prior cancer history. Methods: Two studies were conducted (1) to compare individuals with and without a prior personal cancer diagnosis in terms of those who identified as survivors vs. those who did not identify as survivors and (2) to explore explanations of those with and without a prior personal cancer for the term cancer survivor. In Study 1, individuals were surveyed at cancer-themed community health fairs. In Study 2, women were surveyed at a breast oncology clinic. Results: In Study 1 comparing those with and without a prior cancer diagnosis, prior cancer history was the best predictor of survivorship identity, and only three individuals without a prior cancer history included family and friends as survivors. In Study 2 of those with a personal history, longer time since diagnosis, type of cancer (ductal), and comparative risk (higher) were associated with survivor identity. Conclusion: Completion of treatment was seen as a ‘rite of passage’, and thus, may be seen as a shift from the patient identity, which may have negative connotations, to the positive identity of survivor. Implications: Definitions of survivorship vary considerably, and caution should be used when applying the term to those who have no prior personal cancer diagnosis and to those who have had a more recent cancer diagnosis with a more severe disease course.     

What makes cancer survivor stories work? An empirical study among African American women

Introduction Cancer survivors play a vital role in cancer control as messengers of hope and information, and advocates for prevention and screening. Understanding what makes survivor stories effective can enhance survivor-delivered programs and interventions. Methods By random assignment and using a cross-classified design, 200 African American women viewed videotaped stories (n = 300) from 36 African American breast cancer survivors. Analyses examined effects of story attributes (narrative quality, health message strength), participant characteristics (ways of knowing, experience with breast cancer) and identification with the survivor on women’s: (1) level of engagement in the story; (2) positive thoughts about the story; and, (3) remembering key messages about breast cancer and mammography in the story. Results Participant characteristics were significant predictors of all three study outcomes, accounting for 27.8, 2.6 and 22.2% of their total variance, respectively. In comparison, the variability in these outcomes that could be attributed to differences in the stories was small (0.6, 1.1 and 2%, respectively). The effects of participant characteristics on level of engagement and positive thoughts were mediated by identification with the survivor. Conclusions The best predictor of a woman becoming engaged in a breast cancer survivor’s story and having positive thoughts about the story was whether she liked the survivor and viewed her as similar to herself (i.e., identification). Implications for cancer survivors Survivor stories may be most effective when audience members identify with the survivor. Finding key characteristics that can reliably match the two will advance cancer communication science and practice.     

Fostering partnerships in survivorship care: report of the 2011 Canadian genitourinary cancers survivorship conference

Purpose  

New models of survivorship care are required to address the needs of genitourinary (GU) cancer survivors. Current approaches do not effectively engage cancer survivors or advocacy groups. A group of clinicians in collaboration with the Canadian Urologic Association held a forum for GU cancer survivors, advocacy groups, and health professionals to explore ways to collaboratively enhance survivorship care.     

Defining cancer survivorship

This paper reviews the major definitions of cancer survivorship. The current definition of a cancer survivor used in this new journal will consider many of the elements of cancer survivorship as described in these earlier definitions. It is expected that the details of the definition of cancer survivor will evolve as knowledge in the area increases... The Journal of Cancer Survivorship: Research and Practice will focus on research, academic discourse, and policy-related to adults living with a cancer diagnosis following primary treatment for cancer through the end of life.     

Colorectal cancer survivorship: movement matters

Colorectal cancer survivorship begins at diagnosis and continues throughout life. After diagnosis, survivors face the possibility of second cancers, long-term effects of cancer treatment, and comorbid conditions. Interventions that can provide primary, secondary, and tertiary prevention in this population are important. Physical activity has been shown to decrease colon cancer incidence and recurrence risk as well as improve quality of life and noncancer health outcomes including cardiovascular fitness in colon cancer survivors. The data are less robust for rectal cancer incidence and recurrence, although improvements in quality of life and health outcomes in rectal cancer survivors are also seen. Potential mechanisms for this benefit may occur through inflammatory or insulin-like growth factor pathways. The issues of colorectal cancer survivorship and the impact of physical activity on these issues are reviewed, with discussion of possible biologic mechanisms, barriers to physical activity intervention studies, and future research directions for physical activity in this burgeoning survivor population.     

Returning to work after cancer: quantitative studies and prototypical narratives

Objective: A combination of quantitative data and illustrative narratives may allow cancer survivorship researchers to disseminate their research findings more broadly. We identified recent, methodologically rigorous quantitative studies on return to work after cancer, summarized the themes from these studies, and illustrated those themes with narratives of individual cancer survivors. Methods: We reviewed English‐language studies of return to work for adult cancer survivors through June 2008, and identified 13 general themes from papers that met methodological criteria (population‐based sampling, prospective and longitudinal assessment, detailed assessment of work, evaluation of economic impact, assessment of moderators of work return, and large sample size). We drew survivorship narratives from a prior qualitative research study to illustrate these themes. Results: Nine quantitative studies met four or more of our six methodological criteria. These studies suggested that most cancer survivors could return to work without residual disabilities. Cancer site, clinical prognosis, treatment modalities, socioeconomic status, and attributes of the job itself influenced the likelihood of work return. Three narratives—a typical survivor who returned to work after treatment, an individual unable to return to work, and an inspiring survivor who returned to work despite substantial barriers—illustrated many of the themes from the quantitative literature while providing additional contextual details. Conclusion: Illustrative narratives can complement the findings of cancer survivorship research if researchers are rigorous and transparent in the selection, analysis, and retelling of those stories. Copyright © 2009 John Wiley & Sons, Ltd.     

Defining cancer survivorship: a more transparent approach is needed

Introduction  

There is a lack of a consistent, operational definition of what it means to be a cancer survivor despite widespread use of the term. The term carries positive connotations of ‘beating’ cancer, but some people living past cancer do not identify with this portrayal.     

A novel intervention using interactive technology and personal narratives to reduce cancer disparities: African American breast cancer survivor stories

Purpose

There has been a paucity of interventions developed for African American women to address persistent health disparities between African American and Caucasian breast cancer patients. We developed and piloted a technologically innovative, culturally targeted, cancer-communication intervention for African American breast cancer patients using African American breast cancer survivor stories.

Methods

We rated 917 clips from a video library of survivors’ stories for likability, clarity and length, and emotional impact (scaled responses) and categorized each clip by theme (Coping, Support and Relationships, Healthcare Experiences, Follow-up Care, Quality of Life, and Treatment Side Effects). We selected 207 clips told by 35 survivors (32–68 years old; 4–30 years after diagnosis), fitting one of 12 story topics, for inclusion in the interactive video program loaded onto a touch-screen computer. Videos can be searched by storyteller or story topics; stories with the strongest emotional impact were displayed first in the video program.

Results

We pilot tested the video program with ten African American breast cancer survivors (mean age, 54; range 39–68 years), who, after training, watched videos and then evaluated the stories and video-program usability. Survivor stories were found to be “interesting and informative,” and usability was rated highly. Participants identified with storytellers (e.g., they “think a lot like me,” “have values like mine”) and agreed that the stories convinced them to receive recommended surveillance mammograms.

Conclusions

This novel, cancer-communication technology using survivor stories was very favorably evaluated by breast cancer survivors and is now being tested in a randomized controlled clinical trial.

Implications for Cancer Survivors

Breast cancer survivors can draw support and information from a variety of sources, including from other breast cancer survivors. We developed the survivor stories video program specifically for African American survivors to help improve their quality of life and adherence to follow-up care. Breast cancer survivors’ experiences with treatment and living with cancer make them especially credible messengers of cancer information. Our novel, interactive technology is being tested in a randomized controlled trial and will be more broadly disseminated to reach a wider audience.     

Use of electronic cigarettes among African American cancer survivors

Background

The use of electronic cigarettes (e-cigarettes) is increasing rapidly in the United States, although the negative health outcomes associated with these products are still unknown. Emerging research has examined the use of e-cigarettes in the cancer survivor population as a whole, yet none has focused on e-cigarette use in the African American (AA) cancer survivor population.

Methods

The authors used data from the Detroit Research on Cancer Survivors cohort study, comprised of AA adult cancer survivors. Logistic regression models were used to evaluate factors potentially associated with e-cigarette ever use and current use.

Results

Of 4443 cancer survivors who completed a baseline interview, 8.3% (n = 370) reported ever using e-cigarettes, and 16.5% (n = 61) of those reporting ever use also reported current use of e-cigarettes. Ever users and current users were on average younger than those who did not use e-cigarettes (57.5 vs. 61.2 years; p < .001). Current cigarette smokers were >20 times more likely (odds ratio, 20.75; 95% confidence interval, 12.84–33.55) and former smokers were almost 10 times more likely (odds ratio, 9.50; 95% confidence interval, 6.03–14.97) to have ever used e-cigarettes than never-smokers. Preliminary data suggested that ever use of e-cigarettes is associated with later stage at diagnosis for breast and colorectal cancers.

Conclusions

As the use of e-cigarettes increases in the general population, it is important to continue to monitor their use in cancer survivors and to gain more insight as it pertains to the AA cancer survivor population. Elucidation of the factors associated with e-cigarette use in this population may help inform comprehensive cancer survivorship recommendations and interventions.     

The LIVESTRONG Survivorship Center of Excellence Network

Introduction  The LIVESTRONG™ Survivorship Center of Excellence Network consists of eight National Cancer Institute-designated Comprehensive Cancer Centers funded by the LAF between 2004 and 2008. The Network was created to accelerate the pace of progress in addressing the needs of the growing survivor community. Methods  This paper will briefly describe some of the salient issues surrounding the care of cancer survivors, and examine models of survivorship care that are being developed in individual Centers of Excellence (COE) as well as in the overall Network. Results and Conclusions  As the recommendations and policies for optimal survivorship care have to be feasible and relevant in the community setting, each COE is partnered with up to three community affiliates. Through these partnerships, the community affiliates develop survivorship initiatives at their institutions with support and guidance from their primary COE.     

Utilization of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

BackgroundPersons living after lung cancer remain an important subset of the cancer survivor population who may be at risk for serious health consequences of lung cancer and its treatments. The Institute of Medicine recommends survivorship care plans for all cancer survivors.Materials and MethodsA program for the creation of survivorship care plans, OncoLife, was made publicly accessible. Users responded to queries regarding demographics, diagnosis, and treatment and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence. Data were maintained anonymously with approval from the Institutional Review Board.ResultsFrom May 2007 to November 2008, 3343 individuals completed OncoLife surveys. Lung cancer survivors comprised 4% (n = 142), with a median age at diagnosis of 57 years and median current age of 59 years. Lung cancer survivors were 50% male and 83% Caucasian. Chemotherapy was used in the treatment of 78% of patients with lung cancer, radiation was used in 58%, and surgery was used in 38%. Most lung cancer survivors (62%) reported receiving follow-up care from only an oncologist, while 27% reported being monitored by a primary care provider (PCP) and an oncologist, and 6% saw only a PCP. Only 11% reported receiving survivorship information at the conclusion of therapy.ConclusionOncoLife represents the first Web-based program for the creation of survivorship care plans, and lung cancer survivors appear willing to use this type of tool. Most have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important.     

Symptom severity,symptom interference and use of complementary and alternative medicine among survivors of colorectal and breast cancer after curative treatment in Taiwan

This study compared symptom severity, symptom interference and use of complementary and alternative medicine (CAM) between cancer survivors after curative treatment and individuals who did not have cancer. Factors associated with CAM use among cancer survivors were examined. A cross‐sectional survey was conducted of 146 cancer survivors (77 breast and 69 colorectal cancer survivors who had completed conventional treatment 1–5 years previously and were cancer‐free) from a hospital's cancer registration system (survivor group), and 161 healthy individuals without cancer (comparison group). The two groups were frequency‐matched for sex and age. Findings indicated higher use of CAM in the survivor group (54.1%) than the comparison group (36.6%). There were no significant differences in overall symptom severity and interference between the two groups. Multivariate logistic regression showed that prior use of CAM (OR = 5.14, 95% CI: 2.34–10.69) and higher symptom interference (OR = 1.04, 95% CI: 1.001–1.08) were positively related to CAM use in the survivor group. The survivors did not have higher symptom severity and symptom interference with daily life, but were more likely to use CAM than the comparison group. Medical staff should discuss symptom interference and use of CAM with cancer survivors to guide them in the appropriate use of CAM.     

Reconceptualizing Cancer Survivorship Through Veterans’ Lived Experiences

This study assessed the biopsychosocial impact of cancer on Veteran older adult survivors by garnering their accounts of their illness experiences. A narrative analysis of 73 cancer diagnosis and treatment stories reveals five &ldquo;paths&rdquo; Veterans are taking 18 months postdiagnosis. These paths indicate that cancer survivorship cannot be conceptualized as a one-size-fits-all experience but rather is a process of Veterans understanding and making sense of the effects of cancer on their lives. Our future goal is to develop a screening tool to help clinicians identify a patient&apos;s &ldquo;path&rdquo; to tailor survivorship care to meet specific needs.     

Survivorship care for older adults with cancer: U13 conference report

Older adult cancer survivors currently account for almost 60% of all cancer survivors. The number of older cancer survivors will continue to increase as the population ages and as patients' live longer after a cancer diagnosis. As part of cancer center accreditation, the American College of Surgeons Commission on Cancer® (CoC) has placed great importance on survivorship care planning. While the CoC has set standards for general survivorship care, there is sparse evidence on how to best care for older adult cancer survivors. Concern exists among the medical community that survivorship care plans could increase paperwork without improving outcomes. Given the diverse and unique needs of older adult cancer survivors, the inter-professional team provides a structure and process for survivorship care built around the particular needs of older adults. The Cancer and Aging Research Group (CARG), in partnership with the NIA/NCI, held a U13 conference in May 2015 in part to discuss survivorship care for older adults with cancer. This report discusses four themes that emerged from one section of the conference: (1) survivorship care is a process that continually evolves to meet the needs of older adults; (2) older adult cancer survivors have unique needs and care plans should be tailored to meet these needs; (3) the inter-professional team is ideally suited to structure survivorship care of older adults; (4) patient advocacy must be encouraged throughout the cancer care continuum. As evidence based survivorship practices develop, the unique needs of older adults need to be given substantial attention.     

Survivors of breast cancer: patient perspectives on survivorship care planning

Introduction  

Survivors of breast cancer (SBC) constitute the largest population of cancer survivors. Needs for survivorship care may vary according to life stage and urban/rural place of residence. This study was conducted to better understand patient preferences for survivorship care plans (SCP).     

Getting cancer prevalence right: using state cancer registry data to estimate cancer survivors

Objective  

Cancer incidence and mortality statistics provide limited insight regarding the cancer survivor population and its needs. Cancer prevalence statistics enumerate cancer survivors—those currently living with cancer. Commonly used limited-duration prevalence (LDP) methods yield biased estimates of the number of survivors. National estimates may not allow sufficient granularity to inform local survivorship programs. In this study, complete prevalence (CP) methods are applied to actual North Carolina Central Cancer Registry (NCCCR) data to generate better, more informative prevalence estimates than previous methods.     

A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000–2011

Introduction  

Many large surveys collect data on cancer survivors, but few encompass the full spectrum of domains relevant to survivorship ranging from cancer care to quality of life to late- and long-term effects of cancer and its treatment. Here, we review large data sources in North America collecting cancer survivor-reported health information, and catalogue the domains of cancer survivorship each includes.