“Cancer Survivor”?

Journal of Psychosocial Oncology

ISSN: 0734-7332 (Print) 1540-7586 (Online) Journal homepage: http://www.tandfonline.com/loi/wjpo20

Is it time to reconsider the term “cancer survivor”?

Leonard L. Berry, Scott W. Davis, Andrea Godfrey Flynn, Jeffrey Landercasper & Katie A. Deming

To cite this article: Leonard L. Berry, Scott W. Davis, Andrea Godfrey Flynn, Jeffrey Landercasper & Katie A. Deming (2019): Is it time to reconsider the term “cancer survivor”?, Journal of Psychosocial Oncology To link to this article: https://doi.org/10.1080/07347332.2018.1522411

Published online: 07 Jan 2019.

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ARTICLE Is it time to reconsider the term “cancer survivor”?

Leonard L. Berrya,b, Scott W. Davisc, Andrea Godfrey Flynnd, Jeffrey Landercaspere, and Katie A. Demingf aMays Business School, Texas A&M University, College Station, Texas, USA; bInstitute for Healthcare Improvement, Boston, Massachusetts, USA; cMarilyn Davies College of Business, University of Houston – Downtown, Houston, Texas, USA; dUniversity of San Diego School of Business, San Diego, California, USA; eNorma J. Vinger Center for Breast Care, Gundersen Medical Foundation and Gundersen Health System, La Crosse, Wisconsin, USA; fKaiser Permanente Northwest, Center for Health Research, Portland, Oregon, USA

ABSTRACT KEYWORDS Purpose: To improve understanding of how people diagnosed breast cancer type; older with cancer perceive the term “cancer survivor” and what adults; age/life course; influences those perceptions. quantitative research ’ methods; qualitative Design: Patients reactions to the term were surveyed quanti- research methods; tatively and qualitatively. survivorship Sample: Women who have primarily experienced breast cancer belonging to The Dr. Susan Love Research Foundation’s Army of Women. Methods: An online survey including fixed-alternative and open-ended questions. Conclusions: Using the blanket term “survivor” to label a diverse group is problematic; although the term offers a positive identity for some, others reject it or find it offensive, at least for patients like those represented in this study. If cancer patients are going to be labeled, they should choose the one that is most empowering and reflective of their experience. Implications for Psychosocial Providers: Language used in providing care or describing patients is controllable. If evidence exists that a particular term has the potential to inflict psychological harm, why use the term?

Introduction More than 14 million people diagnosed and living with cancer reside in the – United States, a number estimated to reach 19 million by 2024.1 3 These individuals are typically referred to as “cancer survivors.”4 Conventionally used in other contexts, such as surviving war or an automobile accident, the term “survivor” was first applied to cancer by Mullan,5 a physician who himself had experienced cancer. Mullan rejected the cured/not-cured dichotomy and introduced his “Seasons of Survival”: acute survival (following diagnosis), extended survival (after treatment completion), and permanent survival (as risk for disease recurrence declines).5

CONTACT Leonard L. Berry [email protected] Department of Marketing, Mays Business School, Texas A&M University, 4112 TAMU, College Station, TX 77843-4112. ß 2019 Taylor & Francis Group, LLC 2 L. L. BERRY ET AL.

In 1986, with representatives from more than 20 organizations, Mullan founded the National Coalition for Cancer Survivorship (NCCS) to advo- cate for improving the care of people living with the physical, emotional, social, and spiritual consequences of cancer.6 The NCCS defined “cancer survivor” as a patient living “from the moment of diagnosis and for the balance of his or her life, regardless of the ultimate cause of death.”6,7 Mullan’s seminal contribution and the advocacy of NCCS, the National Cancer Institute (NCI), the American Cancer Society (ACS), and other organizations focused attention within and beyond the oncology community on the medical and practical realities of living with a cancer diagnosis. Both the NCI and ACS endorsed definitions similar to that of the NCCS, i.e., a person is a cancer survivor from diagnosis to death.8 This definition has stimulated considerable debate in more-recent literature and led to alternative conceptions of “cancer survivor.”9 European researchers, for example, have been inclined to define survivors as patients living beyond the end of treatment or 3–5 years from diagnosis, with no indication of disease.10 Feuerstein, founder of The Journal of Cancer Survivorship: Research and Practice, defines cancer survivors as “adult cancer patients following primary treatment until the end of life.”11 The research we report in this article addresses four related questions that we believe merit further examination more than 30 years after Mullan’s article: Is the term “cancer survivor” appropriate? Is a singular definition of “cancer survivor” reasonable? Do individuals who have experienced a cancer diagnosis identify with the term? What, if anything, needs to change about the use of this term?

Labeling a diverse group The NCCS founders never envisioned the term “cancer survivor” as a label,12 though its use has become widespread.4,13 Using a single term for people who share in common a cancer diagnosis is convenient. But in the interest of simplifying communication, can any term do justice to a population as large and heterogeneous as those who have lived with cancer? An analysis of 23 studies of how individuals diagnosed with cancer interpret the term “cancer survivor” 14 shows that while many identify with the term, many others reject it as inappropriate. For some, they fear recurrence;13,15,16 others deem the term disrespectful of those who die from cancer15 or believe the term is more suitable for people with more-serious – cancers than their own.13,15 19 Still others consider “survivor” an identity or label they do not wish to live with13,15,20,21; or not a reflection of who they are as a person.15,17,21 JOURNAL OF PSYCHOSOCIAL ONCOLOGY 3

The prevailing definitions of “cancer survivor” referring to all living people diagnosed with cancer misaligns conceptually with cancer patients presently living who will die from cancer. It is estimated that more than 1.6 million people in the U.S. were diagnosed with cancer in 2017 and more than 600,000 died from cancer.22 Should someone who is going to die from cancer be considered a cancer survivor? The uncertainty unleashed on people diagnosed with cancer is life-changing. Research has documented patients’ common fears of post-treatment recurrence or – death.23 27 Cancer, after all, represents more than 100 distinct diseases that vary widely in their effects, treatment modalities, and prognoses.4 In a 2005 speech, Avis Begoun, a practicing clinical psychologist who had breast cancer, commented: “Breast cancer is a major life event that alters you permanently. I remember shopping for a new frying pan some- time after I was done with treatment. I was walking around Macy’s house- wares, shopping just like everyone else. I asked a saleslady about the frying pan I was looking at, and she said it had a lifetime guarantee, and I sud- denly felt horrified and a sense of dread filled me. It was about cancer. I handed the pan back to her and told her I didn’t want to own a pan that had a better prognosis than I did. Life after treatment!” Alan Astrow, a medical oncologist, was diagnosed with early-stage prostate cancer at age 56. Two years later he wrote: “To this day my cancer diagnosis remains a life-altering experience. The ground does not feel quite as solid beneath me. There is the ever-present anxiety, felt more strongly at some times than at others, that the cancer will return.”28

A clouded picture Considerable research has focused on how people diagnosed with cancer perceive the “cancer survivor” term. Conclusions from this research are hard to draw, however, other than to say that some patients embrace the term, some accept it, some don’t care, some reject it, and some find it offensive. A number of studies are qualitative with small samples, and some empirical studies do not report effect sizes.29 Certain studies have inherent design limitations; forced-choice endorsement, for example, may not capture respondents’ actual feelings and do not reveal why they feel as they do. The question “When you think about yourself in relation to your prostate cancer, which adjective or phrase best describes you: a patient, a victim, someone who has had prostate cancer, cancer survivor, or cancer conqueror?”30 essentially substitutes the researchers’ words for the respondents’. Cheung and Delfabbro’s14 comprehensive review of the research methodologies and findings of studies on patients’ reactions to the cancer survivor 4 L. L. BERRY ET AL.

term reveals the difficulty in drawing clear conclusions. In comparing nine studies that asked respondents to answer “yes” or “no” about whether they identified as a cancer survivor, breast cancer patients in four studies8,13,31,32 averaged 77.9% yes and 22.1% no. In the five studies on other cancers, the – overall average was 53.6% yes and 46.4% no.21,30,33 35 The two prostate cancer studies in this group averaged 30.6% yes and 69.4% no.14 Although the majority of breast cancer respondents in the aforementioned yes/no studies affirm the survivorship identification, other breast cancer research using different methodologies report less-positive findings. In open-ended interviews, Kaiser asked respondents if they referred to themselves as “a survivor” and what that word meant to them. About half of the sample accepted the term while tailoring its meaning to fit themselves; the rest rejected it, some quite strongly.13 Dichotomous and forced-choice questions may yield different results than open-ended questions. Study design limitations — coupled with potentially influential confounding variables such as age, gender, socioeco- nomic status, competing comorbidities, type and stage of disease, life experiences, culture-specific understanding of cancer, and personality — leave a clouded picture of what we know. Our study aims to improve our understanding of cancer identity and the term “cancer survivor.” We used closed- and open-ended survey questions with a relatively large sample of women diagnosed with (primarily breast) cancer to better elucidate their perceptions of the term and inform our conclusions.

Methods This study and its pretest were conducted under approval by the Texas A&M University Institutional Review Board. A quantitative regression analysis was combined with a qualitative thematic analysis to assess how individuals diagnosed with cancer one or more times feel about the term “cancer survivor.” The regression analysis advanced our understanding of variance in sentiments among categories of “survivors”; the qualitative data elucidated positive, negative, and neutral perceptions of the term. By inte- grating closed (“what”) and open (“why”) questioning, we sought to better capture what language people who have been diagnosed with cancer prefer in reference to themselves. To refine the survey instrument, we conducted a pretest with 582 respondents from Smart Patients, an online community of patients and family members affected by cancer and other illnesses. After the pretest, a survey was administered to members of The Dr. Susan Love Research Foundation’s Army of Women (AOW), an organization that connects JOURNAL OF PSYCHOSOCIAL ONCOLOGY 5

researchers with individuals willing to participate in breast cancer research. The AOW provides an opportunity to survey a subset of women who have experienced cancer. Following submission of the study protocol and survey, the Foundation approved the study and included a link to the survey in its March 2017 newsletter.

Statistical analyses Two dependent variables captured the extent to which individuals identify with, and have positive feelings about, the term cancer survivor. We measured identification with the term on a seven-point scale (from strongly disagree to strongly agree) in response to the statement, “I identify myself as a ‘cancer survivor’.” We measured sentiments about the term by asking respondents to indicate their feelings from 0 (negative) to 100 (positive) on a continuous scale. To identify factors associated with these attitudes toward the term, we assessed four individual-level independent variables related to each person’s experience with the disease. The first is a binary measure indicating whether the individual is currently undergoing treatment: 0 ¼ completed treatment; 1 ¼ currently in treatment. Cancer stage (the second independent variable) was categorized across four levels: pre-cancer (Stage 0), localized to the organ of origin (Stage I–II), spread to lymph nodes (Stage III), and spreading to other organs (Stage IV). We then measured types of cancer by asking respondents to indicate whether they had been diagnosed with any of 21 types, and then summing the total of their responses. The fourth independent variable captured the individual’s age at diagnosis. In addition, we included two demographic covariates: current age and annual household income.

Thematic analyses and coding procedure Our qualitative analyses focused on responses to the open-ended question, “What is your personal opinion about the phrase ‘cancer survivor’ and why do you feel as you do?” We chose thematic analysis with human coders to best capture the feelings and perceptions of respondents. Automated con- tent analysis tools were evaluated but deemed inadequate for our research goals. Consistent with guidelines by Braun and Clarke,36 two independent coders worked through a theme-discovery process starting with data famil- iarization. Supervised by members of the research team, coders (graduate students in public health) developed initial codes for recurring comments and then reviewed and discussed them. They next agreed on a set of codes and grouped them into a final set of conceptual themes. Intercoder 6 L. L. BERRY ET AL.

reliability, the percentage of coder agreements on assignment or non- assignment to a theme, was 95%. The coders discussed and reconciled all remaining coding discrepancies. All coding was recorded using Microsoft Excel spreadsheets.

Results For the 1,401 completed surveys we received, respondents were predomin- antly female (99.0%), white (94.9%), and ages 50 to 65 years (49.7%); 87.2% reported having a breast cancer diagnosis at some point in their lives and 12.8% reported a diagnosis of other types of cancer. Because the population size of potential respondents to the survey is unknown, a response rate cannot be calculated. On the seven-point scale assessing respondents identification as a “cancer survivor,” the mean response was 4.75, slightly above neutral. Similarly, the mean response to the question capturing how individuals feel about the term was 60.12 on a scale of 0 (negative) to 100 (positive), just above the indifference point of 50. Table 1 summarizes descriptive statistics for all variables in our analysis. Regression analysis revealed several statistically significant relationships between individual-level characteristics and attitudes toward the term “cancer survivor” (see Table 2). Individuals receiving active treatment for cancer were found to identify less with the term and feel less positive about the term, compared with individuals who had completed their treatment (b ¼ –0.747, p < 0.01; b ¼ –9.975, p < 0.01). In addition, individuals with more-advanced stages of cancer identified less with the term and felt less positive about the term (b ¼ –0.301, p < 0.01; b ¼ –3.855, p < 0.01). As the number of cancer types an individual was diagnosed with increased, identification with the term increased (b ¼ 0.236, p < 0.05); however, we found no significant association between the number of cancer types and

Table 1. Descriptive statistics for survey respondents. Variables Minimum Maximum Mean SD Identification with term 1 7 4.75 2.00 Feel positively about term 0 100 60.12 30.69 Stage of cancer 1 4 2.39 0.73 Total types of cancer 1 6 1.13 0.40 Age when diagnosed 1 79 49.20 11.24 Current age 31 95 58.22 11.85 Proportions Currently undergoing treatment 0 ¼ No 74.6% 1 ¼ Yes 23.6% Annual household income 0 ¼ $100,000 or less 1 ¼ Over $100,000 57.7% 42.3% Note: N ¼ 1401 Dr. Susan Love Army of Women members; SD ¼ standard deviation; Identification with the term “cancer survivor” (1 ¼ strongly disagree, 7 ¼ strongly agree); Feel positively about the term (0 ¼ negative, 100 ¼ positive). JOURNAL OF PSYCHOSOCIAL ONCOLOGY 7

Table 2. Regression analysis of association between patient characteristics and identification with and feelings about the term “cancer survivor.” Identification with term Feel positive about term Dependent variables Independent variables Coefficient t-value Coefficient t-value Intercept 8.880 10.36 117.357 8.92 Currently undergoing treatment –0.747 –4.94 –9.975 –4.28 Stage of cancer –0.301 –3.51 –3.855 –2.92 Total types of cancer 0.236 1.67 2.683 1.23 Age at diagnosis –0.032 –4.04 –0.361 –3.01 Demographic characteristics Current age –0.033 –4.26 –0.506 –4.26 Annual household income –0.093 –0.79 –2.506 –1.38 Sample Size: N 1113 1120 Model Fit: R2 0.08 0.07 p < 0.01. p < 0.05. p < 0.10 (one-tailed test).

individuals’ feelings about the term. As age at diagnosis increased, individuals identified less with the term and had less-positive feelings about it (b ¼ –0.032, p < 0.01; b ¼ –0.361, p < 0.01). We found a significant negative effect of the individual’s current age on both identification with and feelings toward the term, but no statistically significant relationship between annual household income and these attitudes. For the question “What is your personal opinion about the phrase ‘cancer survivor’ and why do you feel as you do?” some of the 1,313 open- ended responses were coded into multiple themes (as appropriate), yielding 1,581 coded comments in all. Table 3 lists theme frequencies for negative, positive, and neutral comments; Table 4 presents illustrative quotes for each theme. Of the 1,581 coded comments, 59.83% were negative toward the phrase “cancer survivor,” 29.35% were positive, and 10.82% were neutral. Most negative comments were captured in one of five themes, with “Disregards My Fear of Recurrence” the most common (representing 27.3% of negative responses and 16.3% of all responses). Among positive responses, “Promotes a Sense of Accomplishment” was most common (46.1% of positive responses, 13.5% of all responses).

Discussion The oncology community, the media, and others often refer to individuals diagnosed with cancer as “cancer survivors.” The motivation to use this term in oncology is noble: to draw attention to the often enduring physical, emotional, social, and spiritual needs of a person diagnosed with cancer, particularly as cancer-related needs change when primary treatment ends. The focus of organizations such as NCCS and NCI’s Office of Cancer Survivorship is to better understand and serve those evolving needs, 8 L. L. BERRY ET AL.

Table 3. Frequency of thematic categories contributing to negative, positive, or neutral perceptions of the “cancer survivor” label. Comment Proportion of same Proportion of valence Thematic categories Frequency valence comments all comments Negative Disregards My Fear of Recurrence 258 27.28% 16.32% (Apprehensiveness; Residual stress; Lack of support; Vigilance; Superstition) Doesn’t Reflect My Unique 209 22.09% 13.22% Experiences (Distinctiveness; Self-Awareness; Oversimplification; Labeling; Over-Complication) I Don’t Want the Reminder 140 14.80% 8.86% (Bad memories; Regret; Sadness; Victimization; Defines me) I Associate It with Death 139 14.69% 8.79% (Dishonorable to those that have passed; Mortality; Risk; Low quality of life; No control) Doesn’t Reflect My Ongoing Struggle 114 12.05% 7.21% (Residual stress; Long-Term adjustment; Unexpected events; Actual recurrence/ progression) Other Negative Comments 86 9.09% 5.44% Total Negative Comments 946 100% 59.84% Positive Promotes a Sense of 214 46.12% 13.54% Accomplishment (Responsibility for own well- being; Self-Confidence; Personal growth; Transformation) Brings Relief 86 18.53% 5.44% (Feeling better; Gratitude; Return to normalcy) Supports Hopefulness for My Future 61 13.15% 3.86% (Ability to move forward; Resilience; Goal striving; Future orientation) Creates a Sense of Community 33 7.11% 2.09% (Sharing and storytelling; Encouraging each other; Caring; Acceptance) Other Positive Comments 70 15.09% 4.43% Total Positive Comments 464 100% 29.35% Neutral Total Neutral Comments 171 100% 10.82% Grand total 1581 100%

and the language of “survivor” and “survivorship” is meant to reinforce such efforts. The use of the single term “cancer survivor” for a large, highly diverse group is destined, however, to fit some in the group far better than others. The simplicity and convenience of a single term thereby creates unintended consequences. Our interest in this area of research was driven especially by the problematic nature of referring to all living individuals diagnosed with cancer as “survivors” given that many will not survive the cancer. This conceptual disconnect was striking to us. Existing research on people’s JOURNAL OF PSYCHOSOCIAL ONCOLOGY 9

Table 4. Illustrative quotes for each major thematic analysis category. Category Quotation Negative Comments Disregards My Fear “I feel like I’m tempting fate when I say I’ve survived it.” of Recurrence “Seems misleading, inaccurate as cancer can always come back.” Doesn’t Reflect My “I don’t deserve to carry the title proudly because I didn’t ‘suffer’ enough Unique Experience to earn.” “The word Survivor has nothing to do with how hard an individual has to fight the disease. Survivor, to me, is a passive word. Fighting and overcoming cancer is pretty active.” I Don’t Want the Reminder “While I am pleased that I have survived cancer (to this point), I do not especially care for the term, as I prefer not to define myself by my cancer diagnosis or status.” “I am considered ‘cured’ and the very thought of it, or using the words takes me to a dark and negative place, of my year from hell. It reminds me of the pain, the multiple infections, all the surgeries for mastectomy, reconstruction, jaw infection, and all those surgeries to stem the infection, my months on Vicodin and the pain of it all that will always be part of me.” I Associate It With Death “I never self-identified as a ‘survivor’ and now that I am metastatic I am angry that the lie of survivorship is perpetrated on us.” “It also confers a kind of achievement that has nothing to do with an individual and it erases the experience of those who have or will die of the disease — what are they, ‘diers’? Are they not worthy of our respect? Have they ‘failed’? I understand why survivor rose to popularity — it’s better than ‘victim’—but it’s become nearly as damaging.” Doesn’t Reflect My “The term cancer survivor implies, to me at least, that a person has Ongoing Struggle withstood all aspects of the treatment and is alive and flourishing. That is not always true since a cancer diagnosis often affects the quality of life either physically and/or emotionally for the duration of a person’s life. Many people live with a post-traumatic stress syndrome while dealing with a cancer dx.” Positive Comments Promotes a Sense of “I take pride in my accomplishment — of winning the battle against this Accomplishment life-threatening disease. And I consider myself one of a many amazing women (and men) who have walked a unique journey.” “I am also a survivor of abuse and when I hear the term ‘survivor’ used in that context it made me feel empowered, instead of victimized. It gave me a sense of strength and power that my abuser had tried to take away. I feel the same way when someone calls me a cancer survivor. It confirms that I am a strong woman, especially when I do not feel that way.” Brings Relief “I feel the relief that I have made it through such a life scare. It does set you aside from others who haven’t had this experience, so I’m okay with the term.” “I embrace it. I am glad to have survived for 6 years. The experience of having cancer deeply impacted me. The thought of recurrence haunts me; surviving is critical.” Supports Hopefulness for “The pros of the term is that when one is going through the cancer My Future treatments, it is uplifting to meet individuals who tell you they are cancer survivors, especially when they look healthy and appear to have moved on with their lives. This was encouragement to me when I met these individuals.” “I feel the term ‘survivor’ serves as an inspiration that cancer is survivable and not a death sentence.” Creates a Sense of Community “I am proud to think of myself as a cancer survivor because I can hopefully encourage and support others in treatment — especially the newly diagnosed.” “I’m thankful to be a cancer survivor and feel a personal connection to other cancer patients.” Neutral Comments “A cancer survivor is anyone who has experienced cancer and is still alive to tell about it.” “A cancer survivor is an individual that has had cancer, and becomes cancer-free, and remains cancer-free past 5 years.” 10 L. L. BERRY ET AL.

acceptance of the “cancer survivor” term does not offer a clear picture about its use, except to reveal that many people diagnosed with cancer do not identify with the term (numbers vary across studies). In our study of primarily women diagnosed with breast cancer, a large proportion of the sample do not feel an affiliation with the survivor term. We measured reactions to the term three different ways: a seven-point scale, a 100-point allocation exercise, and an open-ended question. The open-ended question yielded an approximate 60% negative, 29% positive, 11% neutral split among respondents’ comments. In the two quantitative questions, respondents’ average scores were slightly above neutral. Our findings contrast starkly with those from four breast cancer studies that used a yes/no question to measure if respondents identified as a cancer survivor; the average across those studies was 77.9% “yes.”14 Other studies of breast cancer patients, using different methods, have found that the majority identify with the survivor term37 or reject it.17 Methodological differences are likely, at least in part, to explain such different findings. Our findings show that women currently undergoing treatment and those with advanced cancer are far less likely to identify with the cancer survivor term than women with localized disease who have completed their treatment. “Cancer survivor” does not effectively capture the different phases of the cancer journey, which our data suggest influence perceptions of the term. Nor did the term appear to accommodate age differences in our sample. Older age at diagnosis and study participation correlated with a less-positive perception of the term. Cancer is a high-emotion illness38 that is life-changing for many.4,15,23,29 The emotional intensity of cancer is vividly reflected in numerous comments to our open-ended question; one respondent said, “I never self-identified as a ‘survivor’ and now that I am metastatic I am angry that the lie of survivorship is perpetrated on us” (Table 4). Giving respondents the chance to express their feelings about the term “cancer survivor” in their own words was revealing. The fact that the most frequently mentioned theme was “Disregards My Fear of Recurrence” (16.3% of all coded comments) is consistent with past research on this issue.39,40 Some people identify with the cancer survivor term positively, as our study and other research shows.8,13,14,20,34,41 It can be an empowering identity that may promote personal growth, adjustment to having cancer, a sense of accomplishment, self-esteem, hopefulness, and encouragement of others.30,34,37,42 Nevertheless, several researchers urge caution in using this term.4,10,15,29 We agree. Using a single label to describe such a diverse population invites diverse reaction. Our findings document reason for concern and suggest the need to reconsider the use of “cancer survivor” in blanket fashion. JOURNAL OF PSYCHOSOCIAL ONCOLOGY 11

Do we need a universal label at all in cancer, given that “survivor” is not commonly used for other diseases.15 Indeed, “cancer survivor” is a nonfactual term,29 in contrast with precise characterizations such as “treated for cancer” or “has had cancer.”14,29,41 Some people of course choose to describe themselves as cancer survivors: We searched LinkedIn on March 10, 2018, and found more than 11,000 people using “cancer survivor” in their profiles. Why not let individuals choose their own cancer-related identity, if they wish, particularly if that label is nonfactual?16 If cancer patients are going to be labeled, they should choose the one that is most empowering and reflective of their experience.

Implications for psychosocial oncology In medical school, future physicians are taught “primum non nocere” or “first do no harm.” This medical ethics principle, also known as non-maleficence is a reminder to consider the possible harm that any intervention may cause a patient. Students are taught that given an existing problem, it may be better not to do something, or even to do nothing, than to risk causing more harm than good. We think of non-maleficence in terms of avoiding physical harm that may be caused by medical intervention but this principle could also apply to psychological harm that may be inflicted by language and terminology. Some aspects of a cancer patient’s psychosocial well-being are beyond the control of the care team. Language is one factor that is controllable. The “cancer survivor” term is commonly used in oncology practices (e.g., survivorship clinics, survivorship care plans) and not just by professional cancer organizations and the media. Why purposely use a potentially dis- tressing single term that, while offering a positive identity for some, is rejected by and possibly offensive to others? The term “cancer survivor” does not serve well many of the people it is meant to describe.

Study limitations and strengths Our study has limitations. We surveyed a non-probability sample of primarily women diagnosed with breast cancer. Recruitment was conducted online, and the survey was limited to English-fluent participants. Non-white participants are underrepresented in the sample, similar to other studies on this focal topic.43 Accordingly, our findings are limited in their generaliz- ability, particularly to men, those diagnosed with other cancers, nonwhite people, and those living outside the United States. Our study also has strengths. It measures respondents’ reaction to the survivor term in three different ways, merging quantitative and qualitative 12 L. L. BERRY ET AL. data in an effort to provide greater clarity for an important issue that has lacked clarity. The research underscores that using a single, nonfactual term to label a large, diverse group of people who have experienced cancer is problematic, at least for patients like those represented in our survey. It challenges an unintended but obvious conceptual disconnect that has remained unresolved for too long and has contributed to emotional dis- comfort for some people, as revealed in Tables 3 and 4. We anticipate that well-executed research with patient groups that our survey did not cover would solidify broad-based reconsideration of use of the term “cancer survivor.”

Conclusion Analysis of 1,401 surveys shows that many individuals do not respond positively to the term. A thematic analysis of open-ended responses reveals twice as many negative comments as positive comments. Multivariate regression analysis indicates active cancer treatment, advanced cancer stage, and older age at diagnosis and study participation are associated with less positive perceptions.

Research support Mays Business School, Texas A&M University.

Disclosure statement No potential conflict of interest was reported by the authors.

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