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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 ofPsychosocial 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, JeffreyLandercaspere, and Katie A. Demingf

aMays Business School, Texas A&M University, College Station, Texas, USA; bInstitute forHealthcare Improvement, Boston, Massachusetts, USA; cMarilyn Davies College of Business,University of Houston – Downtown, Houston, Texas, USA; dUniversity of San Diego School ofBusiness, San Diego, California, USA; eNorma J. Vinger Center for Breast Care, Gundersen MedicalFoundation and Gundersen Health System, La Crosse, Wisconsin, USA; fKaiser PermanenteNorthwest, Center for Health Research, Portland, Oregon, USA

ABSTRACTPurpose: To improve understanding of how people diagnosedwith cancer perceive the term “cancer survivor” and whatinfluences those perceptions.Design: Patients’ reactions to the term were surveyed quanti-tatively and qualitatively.Sample: Women who have primarily experienced breastcancer belonging to The Dr. Susan Love Research Foundation’sArmy of Women.Methods: An online survey including fixed-alternative andopen-ended questions.Conclusions: Using the blanket term “survivor” to label adiverse group is problematic; although the term offers a posi-tive identity for some, others reject it or find it offensive, atleast for patients like those represented in this study. If cancerpatients are going to be labeled, they should choose the onethat is most empowering and reflective of their experience.Implications for Psychosocial Providers: Language usedin providing care or describing patients is controllable. Ifevidence exists that a particular term has the potential toinflict psychological harm, why use the term?

KEYWORDSbreast cancer type; olderadults; age/life course;quantitative researchmethods; qualitativeresearch methods;survivorship

Introduction

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

CONTACT Leonard L. Berry BerryLe@tamu.edu Department of Marketing, Mays Business School, TexasA&M University, 4112 TAMU, College Station, TX 77843-4112.� 2019 Taylor & Francis Group, LLC

JOURNAL OF PSYCHOSOCIAL ONCOLOGYhttps://doi.org/10.1080/07347332.2018.1522411

In 1986, with representatives from more than 20 organizations, Mullanfounded 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 “cancersurvivor” as a patient living “from the moment of diagnosis and for thebalance of his or her life, regardless of the ultimate cause of death.”6,7

Mullan’s seminal contribution and the advocacy of NCCS, the NationalCancer Institute (NCI), the American Cancer Society (ACS), and otherorganizations focused attention within and beyond the oncology commu-nity 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 definitionhas stimulated considerable debate in more-recent literature and led toalternative conceptions of “cancer survivor.”9 European researchers, forexample, have been inclined to define survivors as patients living beyondthe end of treatment or 3–5 years from diagnosis, with no indication ofdisease.10 Feuerstein, founder of The Journal of Cancer Survivorship:Research and Practice, defines cancer survivors as “adult cancer patientsfollowing primary treatment until the end of life.”11

The research we report in this article addresses four related questionsthat we believe merit further examination more than 30 years after Mullan’sarticle: Is the term “cancer survivor” appropriate? Is a singular definitionof “cancer survivor” reasonable? Do individuals who have experienceda cancer diagnosis identify with the term? What, if anything, needs tochange about the use of this term?

Labeling a diverse group

The NCCS founders never envisioned the term “cancer survivor” asa label,12 though its use has become widespread.4,13 Using a single term forpeople who share in common a cancer diagnosis is convenient. But in theinterest of simplifying communication, can any term do justice to a popula-tion 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 identifywith the term, many others reject it as inappropriate. For some, they fearrecurrence;13,15,16 others deem the term disrespectful of those who die fromcancer15 or believe the term is more suitable for people with more-seriouscancers than their own.13,15–19 Still others consider “survivor” an identityor label they do not wish to live with13,15,20,21; or not a reflection of whothey are as a person.15,17,21

2 L. L. BERRY ET AL.

The prevailing definitions of “cancer survivor” referring to all livingpeople diagnosed with cancer misaligns conceptually with cancer patientspresently living who will die from cancer. It is estimated that more than1.6 million people in the U.S. were diagnosed with cancer in 2017 andmore than 600,000 died from cancer.22 Should someone who is going todie from cancer be considered a cancer survivor? The uncertaintyunleashed on people diagnosed with cancer is life-changing. Research hasdocumented patients’ common fears of post-treatment recurrence ordeath.23–27 Cancer, after all, represents more than 100 distinct diseases thatvary widely in their effects, treatment modalities, and prognoses.4

In a 2005 speech, Avis Begoun, a practicing clinical psychologist whohad breast cancer, commented: “Breast cancer is a major life event thatalters 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 fryingpan 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. Ihanded the pan back to her and told her I didn’t want to own a pan thathad a better prognosis than I did. Life after treatment!” Alan Astrow, amedical oncologist, was diagnosed with early-stage prostate cancer at age56. Two years later he wrote: “To this day my cancer diagnosis remains alife-altering experience. The ground does not feel quite as solid beneathme. There is the ever-present anxiety, felt more strongly at some timesthan at others, that the cancer will return.”28

A clouded picture

Considerable research has focused on how people diagnosed with cancerperceive the “cancer survivor” term. Conclusions from this research arehard to draw, however, other than to say that some patients embrace theterm, some accept it, some don’t care, some reject it, and some find itoffensive. A number of studies are qualitative with small samples, andsome empirical studies do not report effect sizes.29 Certain studies haveinherent design limitations; forced-choice endorsement, for example, maynot capture respondents’ actual feelings and do not reveal why they feel asthey do. The question “When you think about yourself in relation to yourprostate cancer, which adjective or phrase best describes you: a patient, avictim, someone who has had prostate cancer, cancer survivor, or cancerconqueror?”30 essentially substitutes the researchers’ words for therespondents’.Cheung and Delfabbro’s14 comprehensive review of the research method-

ologies and findings of studies on patients’ reactions to the cancer survivor

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term reveals the difficulty in drawing clear conclusions. In comparing ninestudies that asked respondents to answer “yes” or “no” about whether theyidentified 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, theoverall average was 53.6% yes and 46.4% no.21,30,33–35 The two prostatecancer studies in this group averaged 30.6% yes and 69.4% no.14 Althoughthe majority of breast cancer respondents in the aforementioned yes/nostudies affirm the survivorship identification, other breast cancer researchusing different methodologies report less-positive findings. In open-endedinterviews, Kaiser asked respondents if they referred to themselves as “asurvivor” and what that word meant to them. About half of the sampleaccepted the term while tailoring its meaning to fit themselves; the restrejected it, some quite strongly.13

Dichotomous and forced-choice questions may yield different resultsthan open-ended questions. Study design limitations — coupled withpotentially influential confounding variables such as age, gender, socioeco-nomic status, competing comorbidities, type and stage of disease, life expe-riences, culture-specific understanding of cancer, and personality — leave aclouded 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 questionswith a relatively large sample of women diagnosed with (primarily breast)cancer to better elucidate their perceptions of the term and inform ourconclusions.

Methods

This study and its pretest were conducted under approval by the TexasA&M University Institutional Review Board. A quantitative regression ana-lysis was combined with a qualitative thematic analysis to assess how indi-viduals diagnosed with cancer one or more times feel about the term“cancer survivor.” The regression analysis advanced our understanding ofvariance in sentiments among categories of “survivors”; the qualitative dataelucidated positive, negative, and neutral perceptions of the term. By inte-grating closed (“what”) and open (“why”) questioning, we sought to bettercapture what language people who have been diagnosed with cancer preferin reference to themselves.To refine the survey instrument, we conducted a pretest with 582

respondents from Smart Patients, an online community of patients andfamily members affected by cancer and other illnesses. After the pretest, asurvey was administered to members of The Dr. Susan Love ResearchFoundation’s Army of Women (AOW), an organization that connects

4 L. L. BERRY ET AL.

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

Statistical analyses

Two dependent variables captured the extent to which individuals identifywith, and have positive feelings about, the term cancer survivor. We meas-ured identification with the term on a seven-point scale (from strongly dis-agree to strongly agree) in response to the statement, “I identify myself as a‘cancer survivor’.” We measured sentiments about the term by askingrespondents to indicate their feelings from 0 (negative) to 100 (positive) ona continuous scale.To identify factors associated with these attitudes toward the term, we

assessed four individual-level independent variables related to each person’sexperience with the disease. The first is a binary measure indicatingwhether the individual is currently undergoing treatment: 0¼ completedtreatment; 1¼ currently in treatment. Cancer stage (the second independ-ent variable) was categorized across four levels: pre-cancer (Stage 0), local-ized 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 can-cer by asking respondents to indicate whether they had been diagnosedwith any of 21 types, and then summing the total of their responses. Thefourth independent variable captured the individual’s age at diagnosis. Inaddition, we included two demographic covariates: current age and annualhousehold 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 whydo you feel as you do?” We chose thematic analysis with human coders tobest capture the feelings and perceptions of respondents. Automated con-tent analysis tools were evaluated but deemed inadequate for our researchgoals. Consistent with guidelines by Braun and Clarke,36 two independentcoders worked through a theme-discovery process starting with data famil-iarization. Supervised by members of the research team, coders (graduatestudents in public health) developed initial codes for recurring commentsand then reviewed and discussed them. They next agreed on a set of codesand grouped them into a final set of conceptual themes. Intercoder

JOURNAL OF PSYCHOSOCIAL ONCOLOGY 5

reliability, the percentage of coder agreements on assignment or non-assignment to a theme, was 95%. The coders discussed and reconciled allremaining coding discrepancies. All coding was recorded using MicrosoftExcel 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 and12.8% reported a diagnosis of other types of cancer. Because the populationsize of potential respondents to the survey is unknown, a response ratecannot be calculated. On the seven-point scale assessing respondents identi-fication as a “cancer survivor,” the mean response was 4.75, slightly aboveneutral. Similarly, the mean response to the question capturing how indi-viduals 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 summarizesdescriptive 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 forcancer were found to identify less with the term and feel less positive aboutthe term, compared with individuals who had completed their treatment(b¼ –0.747, p< 0.01; b¼ –9.975, p< 0.01). In addition, individuals withmore-advanced stages of cancer identified less with the term and felt lesspositive about the term (b¼ –0.301, p< 0.01; b¼ –3.855, p< 0.01). As thenumber of cancer types an individual was diagnosed with increased, identi-fication with the term increased (b¼ 0.236, p< 0.05); however, we foundno 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 2.00Feel positively about term 0 100 60.12 30.69Stage of cancer 1 4 2.39 0.73Total types of cancer 1 6 1.13 0.40Age when diagnosed 1 79 49.20 11.24Current age 31 95 58.22 11.85

ProportionsCurrently undergoing treatment0¼No 74.6%1¼ Yes 23.6%Annual household income0¼ $100,000 or less 1¼Over $100,000 57.7% 42.3%

Note: N¼ 1401 Dr. Susan Love Army of Women members; SD¼ standard deviation; Identification with the term“cancer survivor” (1¼ strongly disagree, 7¼ strongly agree); Feel positively about the term (0¼ negative,100¼ positive).

6 L. L. BERRY ET AL.

individuals’ feelings about the term. As age at diagnosis increased, individu-als identified less with the term and had less-positive feelings about it(b¼ –0.032, p< 0.01; b¼ –0.361, p< 0.01). We found a significant negativeeffect of the individual’s current age on both identification with and feel-ings toward the term, but no statistically significant relationship betweenannual 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), yielding1,581 coded comments in all. Table 3 lists theme frequencies for negative,positive, and neutral comments; Table 4 presents illustrative quotes foreach theme. Of the 1,581 coded comments, 59.83% were negative towardthe phrase “cancer survivor,” 29.35% were positive, and 10.82% wereneutral. Most negative comments were captured in one of five themes,with “Disregards My Fear of Recurrence” the most common (representing27.3% of negative responses and 16.3% of all responses). Among positiveresponses, “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 individualsdiagnosed with cancer as “cancer survivors.” The motivation to use thisterm 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 CancerSurvivorship is to better understand and serve those evolving needs,

Table 2. Regression analysis of association between patient characteristics and identificationwith and feelings about the term “cancer survivor.”

Dependent variablesIdentification with term Feel positive about term

Independent variables Coefficient t-value Coefficient t-value

Intercept 8.880��� 10.36 117.357��� 8.92Currently undergoing treatment –0.747��� –4.94 –9.975��� –4.28Stage of cancer –0.301��� –3.51 –3.855��� –2.92Total types of cancer 0.236�� 1.67 2.683 1.23Age at diagnosis –0.032��� –4.04 –0.361��� –3.01Demographic characteristicsCurrent age –0.033��� –4.26 –0.506��� –4.26Annual household income –0.093 –0.79 –2.506� –1.38Sample Size: N 1113 1120Model Fit: R2 0.08 0.07���p< 0.01.��p< 0.05.�p< 0.10 (one-tailed test).

JOURNAL OF PSYCHOSOCIAL ONCOLOGY 7

and the language of “survivor” and “survivorship” is meant to reinforcesuch 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 unintendedconsequences. Our interest in this area of research was driven especially bythe problematic nature of referring to all living individuals diagnosedwith cancer as “survivors” given that many will not survive the cancer. Thisconceptual disconnect was striking to us. Existing research on people’s

Table 3. Frequency of thematic categories contributing to negative, positive, or neutralperceptions of the “cancer survivor” label.Commentvalence Thematic categories Frequency

Proportion of samevalence comments

Proportion ofall comments

Negative Disregards My Fear of Recurrence(Apprehensiveness; Residual

stress; Lack of support;Vigilance; Superstition)

258 27.28% 16.32%

Doesn’t Reflect My UniqueExperiences(Distinctiveness; Self-Awareness;

Oversimplification; Labeling;Over-Complication)

209 22.09% 13.22%

I Don’t Want the Reminder(Bad memories; Regret; Sadness;

Victimization; Defines me)

140 14.80% 8.86%

I Associate It with Death(Dishonorable to those that have

passed; Mortality; Risk; Lowquality of life; No control)

139 14.69% 8.79%

Doesn’t Reflect My Ongoing Struggle(Residual stress; Long-Term

adjustment; Unexpectedevents; Actual recurrence/progression)

114 12.05% 7.21%

Other Negative Comments 86 9.09% 5.44%Total Negative Comments 946 100% 59.84%

Positive Promotes a Sense ofAccomplishment(Responsibility for own well-being; Self-Confidence; Personalgrowth; Transformation)

214 46.12% 13.54%

Brings Relief(Feeling better; Gratitude;

Return to normalcy)

86 18.53% 5.44%

Supports Hopefulness for My Future(Ability to move forward;

Resilience; Goal striving;Future orientation)

61 13.15% 3.86%

Creates a Sense of Community(Sharing and storytelling;

Encouraging each other;Caring; Acceptance)

33 7.11% 2.09%

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%

8 L. L. BERRY ET AL.

Table 4. Illustrative quotes for each major thematic analysis category.Category Quotation

Negative CommentsDisregards My Fear

of Recurrence“I feel like I’m tempting fate when I say I’ve survived it.”“Seems misleading, inaccurate as cancer can always come back.”

Doesn’t Reflect MyUnique Experience

“I don’t deserve to carry the title proudly because I didn’t ‘suffer’ enoughto earn.”

“The word Survivor has nothing to do with how hard an individual hasto fight the disease. Survivor, to me, is a passive word. Fighting andovercoming cancer is pretty active.”

I Don’t Want the Reminder “While I am pleased that I have survived cancer (to this point), I do notespecially care for the term, as I prefer not to define myself by my cancerdiagnosis or status.”

“I am considered ‘cured’ and the very thought of it, or using the wordstakes me to a dark and negative place, of my year from hell. It remindsme of the pain, the multiple infections, all the surgeries for mastectomy,reconstruction, jaw infection, and all those surgeries to stem theinfection, my months on Vicodin and the pain of it all that will always bepart of me.”

I Associate It With Death “I never self-identified as a ‘survivor’ and now that I am metastatic I amangry that the lie of survivorship is perpetrated on us.”

“It also confers a kind of achievement that has nothing to do with anindividual and it erases the experience of those who have or will die ofthe disease — what are they, ‘diers’? Are they not worthy of our respect?Have they ‘failed’? I understand why survivor rose to popularity — it’sbetter than ‘victim’ — but it’s become nearly as damaging.”

Doesn’t Reflect MyOngoing Struggle

“The term cancer survivor implies, to me at least, that a person haswithstood all aspects of the treatment and is alive and flourishing. Thatis not always true since a cancer diagnosis often affects the quality oflife either physically and/or emotionally for the duration of a person’slife. Many people live with a post-traumatic stress syndrome whiledealing with a cancer dx.”

Positive CommentsPromotes a Sense ofAccomplishment

“I take pride in my accomplishment — of winning the battle against thislife-threatening disease. And I consider myself one of a many amazingwomen (and men) who have walked a unique journey.”

“I am also a survivor of abuse and when I hear the term ‘survivor’ used inthat context it made me feel empowered, instead of victimized. It gaveme a sense of strength and power that my abuser had tried to takeaway. 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 feelthat way.”

Brings Relief “I feel the relief that I have made it through such a life scare. It does setyou aside from others who haven’t had this experience, so I’m okay withthe term.”

“I embrace it. I am glad to have survived for 6 years. The experience ofhaving cancer deeply impacted me. The thought of recurrence hauntsme; surviving is critical.”

Supports Hopefulness forMy Future

“The pros of the term is that when one is going through the cancertreatments, it is uplifting to meet individuals who tell you they are cancersurvivors, especially when they look healthy and appear to have movedon with their lives. This was encouragement to me when I met theseindividuals.”

“I feel the term ‘survivor’ serves as an inspiration that cancer is survivableand not a death sentence.”

Creates a Sense of Community “I am proud to think of myself as a cancer survivor because I can hopefullyencourage and support others in treatment — especially thenewly diagnosed.”

“I’m thankful to be a cancer survivor and feel a personal connection toother 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.”

JOURNAL OF PSYCHOSOCIAL ONCOLOGY 9

acceptance of the “cancer survivor” term does not offer a clear pictureabout its use, except to reveal that many people diagnosed with cancer donot 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-pointscale, a 100-point allocation exercise, and an open-ended question. Theopen-ended question yielded an approximate 60% negative, 29% positive,11% neutral split among respondents’ comments. In the two quantitativequestions, respondents’ average scores were slightly above neutral. Ourfindings contrast starkly with those from four breast cancer studies thatused a yes/no question to measure if respondents identified as a cancersurvivor; the average across those studies was 77.9% “yes.”14 Other studiesof breast cancer patients, using different methods, have found thatthe majority identify with the survivor term37 or reject it.17 Methodologicaldifferences 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 cancersurvivor term than women with localized disease who have completed theirtreatment. “Cancer survivor” does not effectively capture the differentphases of the cancer journey, which our data suggest influence perceptionsof the term. Nor did the term appear to accommodate age differences inour sample. Older age at diagnosis and study participation correlated witha 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 numerouscomments to our open-ended question; one respondent said, “I neverself-identified as a ‘survivor’ and now that I am metastatic I am angry thatthe lie of survivorship is perpetrated on us” (Table 4). Giving respondentsthe chance to express their feelings about the term “cancer survivor” intheir own words was revealing. The fact that the most frequentlymentioned theme was “Disregards My Fear of Recurrence” (16.3% of allcoded comments) is consistent with past research on this issue.39,40

Some people identify with the cancer survivor term positively, as ourstudy and other research shows.8,13,14,20,34,41 It can be an empoweringidentity that may promote personal growth, adjustment to having cancer,a sense of accomplishment, self-esteem, hopefulness, and encouragement ofothers.30,34,37,42 Nevertheless, several researchers urge caution in using thisterm.4,10,15,29 We agree. Using a single label to describe such a diversepopulation invites diverse reaction. Our findings document reason forconcern and suggest the need to reconsider the use of “cancer survivor” inblanket fashion.

10 L. L. BERRY ET AL.

Do we need a universal label at all in cancer, given that “survivor” is notcommonly used for other diseases.15 Indeed, “cancer survivor” is a nonfac-tual term,29 in contrast with precise characterizations such as “treated forcancer” or “has had cancer.”14,29,41 Some people of course choose todescribe themselves as cancer survivors: We searched LinkedIn on March10, 2018, and found more than 11,000 people using “cancer survivor” intheir profiles. Why not let individuals choose their own cancer-relatedidentity, if they wish, particularly if that label is nonfactual?16 If cancerpatients are going to be labeled, they should choose the one that is mostempowering 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-mal-eficence is a reminder to consider the possible harm that any interventionmay cause a patient. Students are taught that given an existing problem, itmay be better not to do something, or even to do nothing, than to riskcausing more harm than good. We think of non-maleficence in terms ofavoiding physical harm that may be caused by medical intervention butthis principle could also apply to psychological harm that may be inflictedby 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 professionalcancer organizations and the media. Why purposely use a potentially dis-tressing single term that, while offering a positive identity for some, isrejected 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 pri-marily women diagnosed with breast cancer. Recruitment was conductedonline, and the survey was limited to English-fluent participants. Non-whiteparticipants are underrepresented in the sample, similar to other studies onthis focal topic.43 Accordingly, our findings are limited in their generaliz-ability, particularly to men, those diagnosed with other cancers, nonwhitepeople, 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

JOURNAL OF PSYCHOSOCIAL ONCOLOGY 11

data in an effort to provide greater clarity for an important issue that haslacked clarity. The research underscores that using a single, nonfactualterm to label a large, diverse group of people who have experienced canceris problematic, at least for patients like those represented in our survey. Itchallenges an unintended but obvious conceptual disconnect that hasremained unresolved for too long and has contributed to emotional dis-comfort for some people, as revealed in Tables 3 and 4. We anticipate thatwell-executed research with patient groups that our survey did not coverwould solidify broad-based reconsideration of use of the term“cancer survivor.”

Conclusion

Analysis of 1,401 surveys shows that many individuals do not respond posi-tively to the term. A thematic analysis of open-ended responses revealstwice as many negative comments as positive comments. Multivariateregression analysis indicates active cancer treatment, advanced cancer stage,and older age at diagnosis and study participation are associated with lesspositive perceptions.

Research support

Mays Business School, Texas A&M University.

Disclosure statement

No potential conflict of interest was reported by the authors.

References

1. Jacobsen PB, Rowland JH, Paskett ED. Identification of key gaps in cancer survivor-ship: findings from the American Society of Clinical Oncology Survey. JOP 2016;12(3):190–193.

2. de Moor JS, Mariotto AB, Perry C. Cancer survivors in the United States: prevalenceacross the survivorship trajectory and implications for care. Cancer EpidemiolBiomarkers Prev. 2013;22(4):561–570.

3. DeSantis CE, Lin CC, Mariotto AB. Cancer treatment and survivorship statistics,2014. CA Cancer J Clin. 2014;64(4):252–271.

4. Bell K, Ristovski-Slijepcevic S. Cancer survivorship: why labels matter. J Clin Oncol2013; 31(4):409–411.

5. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med.1985;313(4):270–273.

6. Rowland JH, Hewitt M, Ganz PA. Cancer survivorship: a new challenge in deliveringquality cancer care. J Clin Oncol. 2006;24(32):5101–5104.

12 L. L. BERRY ET AL.

7. Institute of Medicine and the National Research Council. From Cancer Patient toCancer Survivor: Lost in Transition. Washington DC: National Academies Press;2005.

8. Kelly KM, Shah N, Shedlosky-Shoemaker R, Porter K, Agnese D. Living post treat-ment: definitions of those with history and no history of cancer. J Cancer Surviv.2011;5(2):158–166.

9. Marzorati C, Riva S, Pravettoni G. Who is a cancer survivor? A systematic review ofpublished definitions. J Cancer Educ. 2017;32(2):228–237.

10. Surbone A, Annunziata MA, Santoro A, Tirelli U, Tralongo P. Cancer patients andsurvivors: changing words or changing culture. Ann Oncol. 2013;24(10):2468–2471.

11. Feuerstein M. Defining cancer survivorship. J Cancer Surviv. 2007;1(1):5–7.12. Sotham J. Defining cancer survivorship. Cure Today 2017; https://www.curetoday.com/

publications/cure/2017/fall-2017/defining-cancer-survivorship. Published November 4,Accessed April 3, 2018.

13. Kaiser K. The meaning of the survivor identity for women with breast cancer. Soc SciMed. 2008;67(1):79–87.

14. Cheung SY, Delfabbro P. Are you a cancer survivor? A review on cancer identity. JCancer Surviv. 2016;10(4):759–771.

15. Khan NF, Harrison S, Rose PW, Ward A, Evans J. Interpretation and acceptance ofthe term ’cancer survivor’: a United Kingdom-based qualitative study. Eur J CancerCare (Engl). 2012;21(2):177–186.

16. McGrath P, Holewa H. What does the term ‘survivor’ mean to individuals diagnosedwith a hematological malignancy? Findings from Australia. Support Care Cancer.2012;20(12):3287–3295.

17. Pieters HC, Heilemann MV. Once you’re 82 going on 83, surviving has a differentmeaning: older breast cancer survivors reflect on cancer survivorship. Cancer Nurs.2011;34(2):124–133.

18. Miller LE. People don’t understand that it is not easy being a cancer survivor: com-municating and negotiating identity throughout cancer survivorship. SouthernCommun J. 2015;80(1):1–19.

19. Beehler GP, Rodrigues AE, Kay MA, Kiviniemi MT, Steinbrenner L. Lasting impact:understanding the psychosocial implications of cancer among military veterans. JPsychosoc Oncol. 2013;31(4):430–450.

20. Smith KC, Klassen AC, Coa KI, Hannum SM. The salience of cancer and the“survivor” identity for people who have completed acute cancer treatment: a qualita-tive study. J Cancer Surviv. 2016;10(3):457–466.

21. Allen KR, Roberto KA. Older women in Appalachia: experiences with gynecologicalcancer. Gerontologist. 2014;54(6):1024–1034.

22. Howlader N, Noone AM, Krapcho M. SEER Cancer Statistics Review, 1975–2014.Washington DC: National Cancer Institute; 2017. https://seer.cancer.gov/csr/1975_2014/. Based on November 2016 SEER data submission. Published April 2017.Accessed April 3, 2018.

23. Doyle N. Cancer survivorship: evolutionary concept analysis. J Adv Nurs. 2008;62(4):499–509.

24. Aziz NM, Rowland JH. Trends and advances in cancer survivorship research:challenges and opportunity. Seminars Rad Oncol. 2003;13(3):248–266.

25. Cheng KKF, Thompson DR, Ling WM, Chan CWH. Measuring symptom prevalence,severity and distress of cancer survivors. Clin Effect Nurs. 2005;9(3-4):154–160.

JOURNAL OF PSYCHOSOCIAL ONCOLOGY 13

26. De Marco RF, Picard C, Agretelis J. Nurse experiences as cancer survivors: part 1 –personal. Oncol Nurs Forum. 2004;31(3):523–530.

27. Mellon S, Northouse LL, Weiss LK. A population-based study of the quality of lifeof cancer survivors and their family caregivers. Cancer Nurs. 2006;29(2):120–131.

28. Astrow AB. A piece of my mind. Cancer survivorship and beyond. JAMA 2012;308(16):1639–1640.

29. Shapiro GK. Exploring cancer identities: does the label “patient” or “survivor”matter? OE 2016;15(3):34–36.

30. Bellizzi KM, Blank TO. Cancer-related identity and positive affect in survivorsof prostate cancer. J Cancer Surviv. 2007;1(1):44–48.

31. Documet PI, Trauth JM, Key M, Flatt J, Jernigan J. Breast cancer survivors’perception of survivorship. Oncol Nurs Forum. 2012;39(3):309–315.

32. Jagielski CH, Hawley ST, Corbin K, Weiss MC, Griggs JJ. A phoenix rising:who considers herself a “survivor” after a diagnosis of breast cancer?. J CancerSurviv. 2012;6(4):451–457.

33. Morris BA, Lepore SJ, Wilson B, Lieberman MA, Dunn J, Chambers SK. Adoptinga survivor identity after cancer in a peer support context. J Cancer Surviv. 2014;8(3):427–436.

34. Chambers SK, Baade P, Meng X, Youl P, Aitken J, Dunn J. Survivor identity aftercolorectal cancer: antecedents, prevalence and outcomes. Psycho-Oncology 2012;21(9):962–969.

35. Dyer KE. Surviving is not the same as living: cancer and Sobrevivencia in PuertoRico. Soc Sci Med. 2015;132:20–29.

36. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psych. 2006;3(2):77–101.

37. Deimling GT, Bowman KF, Wagner LJ. Cancer survivorship and identity amonglong-term survivors. Cancer Invest. 2007;25(8):758–765.

38. Berry LL, Davis SW, Wilmet J. When the customer is stressed. Harv Bus Rev 2015;93(1):86–94.

39. Simard S, Thewes B, Humphris G, et al. Fear of cancer recurrence in adult cancersurvivors: a systematic review of quantitative studies. J Cancer Surviv. 2013;7(3):300–322.

40. Ness S, Kokal J, Fee-Schroeder K, Novotny P, Satele D, Barton D. Concern across thesurvivorship trajectory: results from a survey of cancer survivors. Oncol Nurs Forum.2013;40(1):35–42.

41. Park CL, Zlateva I, Blank TO. Self-identity after cancer: “survivor,” victim,” “patient,”and “person with cancer.” J Gen Intern Med. 2009;24(S2):430–435.

42. Cho D, Park CL. Cancer-related identities in people diagnosed during lateadolescence and young adulthood. Br J Health Psychol. 2015;20(3):594–612.

43. Davis CM, Myers HF, Nyamathi AM, Lewis M, Brecht ML. The meaning of survivor-ship as defined by African American breast cancer survivors. J Transcult Nurs. 2016;27(3):277–285.

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