“Teetering on a Tightrope”: Uncertainty and Information Management During the Cancer Pre-Diagnosis Phase

Abstract

Facing a potential cancer diagnosis can be rife with dichotomous and chaining uncertainty. This study draws from Uncertainty Management Theory and the Theory of Motivated Information Management to explore patient experiences in the pre-diagnosis phase: the time between when suspicious symptoms are observed and a positive or negative cancer diagnosis is received. Fifty-five interviews were conducted with people who underwent a cancer diagnosis process in the five years prior to the interview. Using thematic analysis, this study highlights the challenges of temporal and testing uncertainties, as well as information management strategies of avoidance, tailored experiential support, and agentic medical research.

Keywords:

• Cancer
• Information Management
• Pre-Diagnosis Phase; Uncertainty
•  

With over 18 million new diagnoses worldwide in 2020 (“Worldwide Cancer Data”, 2023), cancer continues to be a notable public health challenge. As one of the most feared diseases (Park, Kim, Yang, & Min, 2020), cancer and uncertainty are inextricably linked (Yu Ko & Degner, 2008). Uncertainty exists at multiple points throughout the cancer trajectory, from troubling symptoms or a family history, all the way through post-treatment concerns surrounding quality of life. Illness uncertainty refers to one’s “inability to determine the meaning of illness related events” due to information complexity and ambiguity, as well as an inability to predict future outcomes (Mishel, 1988, p. 225). The majority of communication research on cancer-related uncertainty focuses on diagnosis and beyond. This study’s focus on the pre-diagnosis phase includes the period when an individual has troubling signs or symptoms and is undergoing testing but has yet to receive a positive or negative diagnosis.¹

To date, the pre-diagnosis stage has been studied from health care perspectives, typically through quantitative methods with populations served by national health care systems (e.g., Liao et al., 2008, 2010; Moseholm et al., 2016; Wiljer et al., 2012). The aforementioned studies highlight the human toll of the pre-diagnosis experience: irrespective of eventual diagnosis, patients undergoing cancer testing show high levels of clinical anxiety. Pre-diagnosis patients have uncertainty that is both dichotomous (positive or negative for cancer) and chaining (see Babrow, 2001), with additional uncertainties related to treatments and quality of life associated with different possible diagnoses. Just as a positive cancer diagnosis is not necessary for one to experience uncertainty (Hogan & Brashers, 2009), the same holds constant for information-seeking behaviors to commence (Campbell-Salome & Barbour, 2022). Previous research has underscored the need to explore uncertainty derived from ambiguous and complex information (Kalke, Studd, & Scherr, 2021) as well as examine the impact between illness uncertainty and information management patterns (Kuang & Wilson, 2017). This project looks to make meaningful contributions to the larger body of cancer communication research by exploring how individuals manage dichotomous, chaining uncertainty and related information needs before a diagnosis is rendered. To do so, this study qualitatively investigates the lived experiences of U.S. based patients in the pre-diagnosis phase.

Uncertainty and the Pre-Diagnosis Phase

Uncertainty can arise from insecurity in one’s “own state of knowledge or the state of knowledge in general” (Brashers, 2001, p. 478). Medical uncertainties in the pre-diagnosis phase include “ambiguity of diagnosis” and “unknown etiology of symptoms” (Brashers et al., 2003, p. 503), as well as a lack of information (Shaha, Cox, Talman, & Kelly, 2008). While the assumption is that most individuals seek to reduce uncertainty (e.g., Uncertainty Reduction Theory; Berger & Calabrese, 1975), there are times when reducing uncertainty may not be preferable. Per Uncertainty Management Theory (UMT), “maintaining or increasing uncertainty can play an important role in preserving or establishing psychological well-being” (Brashers et al., 2000, p. 64). Thus, uncertainty should be viewed as a neutral cognitive state (Mishel, 1988).

Uncertainty during the pre-diagnosis phase is both fraught (“I could be a cancer patient;” the disease could be deadly) and vast (symptoms could have a number of mild or severe causes and treatments). The former addresses dichotomous uncertainty with an ontological nature, whereas the latter can be described as chaining uncertainty with an epistemological nature (Babrow, 2001). In problematic integration theory, Babrow (2001) described the “dynamic interrelationships among forms of uncertainty” (p. 561) and captured the challenges related to the quantity and nature of information, as well as how to organize that information. Getting one answer to a significant question does not punctuate the end of that uncertainty; instead, Babrow (2001) wrote, “we may reduce our uncertainty only to find out that something we dread is more likely than we had at first feared” (p. 562). Due to the “chaining” nature of the pre-diagnosis phase, testing can open the door to new uncertainties that were not initially considered. In a study of women’s experiences awaiting breast cancer surgery, Drageset, Lindstrøm, Giske, and Underlid (2011) found that various uncertainties and anxieties rose to the foreground, depending on if the patient was pre-diagnosis, pre-surgery, and post-surgery.

Fruitful pre-diagnosis connections can also be made with previvor communication research, which focus on “individuals with a genetic predisposition to develop hereditary breast and ovarian cancer (HBOC), but who have not been diagnosed with cancer” (Dean & Davidson, 2018, p. 122). Qualitative previvor studies have suggested productive uncertainty management techniques (Dean & Davidson, 2018), as well as analyzed the ongoing management of uncertainty and risk throughout one’s lifetime (Dean & Fisher, 2019). In a study of breast cancer previvors, Wellman, Holton, and Kaphingst (2023) equated uncertainty and fear as part of the “previvorship journey” (p. 3). If uncertainty is not managed, Dean (2016) stressed the inevitability of negative psychological impact.

For patients who are not previvors, the pre-diagnosis phase also comes with “overwhelming amounts of uncertainty and distress” (Rogers, Pope, Whitfield, Cohn, & Valdez, 2022, p. 555). Surveying women undergoing breast cancer testing, Liao, Chen, Chen, and Chen (2008) found that both uncertainty and anxiety were highest for participants before diagnosis than after, regardless of a positive or negative diagnosis. This finding was reinforced by Bronner, Nguyen, Smets, van da Ven, and van Weert (2018) where patients undergoing testing for colorectal cancer noted a reduction in anxiety upon diagnosis, but not eliminating anxiety altogether—perhaps because cancer testing evokes “existential awareness” (Drageset, Lindstrøm, Giske, & Underlid, 2011). The pre-diagnosis phase deals with similar stressors as post-diagnosis (e.g., diagnostic ambiguity, treatment complexities, lack of prognosis predictability, as well as personal and relational sources of uncertainty; Miller, 2012), but the uncertainty has more interrelated chains because a diagnosis does not yet exist to provide future directions and challenges to be faced. Specific to the period leading up to a cancer diagnosis, Gunter and Duke (2018) noted that uncertainty, stress, and anxiety are significantly heightened due to limited clarity of current lived experiences and future plans.

The aforementioned literature offers some insights for uncertainty in the pre-diagnosis phase and how it may function differently than in a post-diagnosis phase. One expected contribution of this study concerns appraisal and management of the dichotomous and chaining uncertainties that begins with troubling symptoms. Our label of dichotomous uncertainty (positive cancer diagnosis, negative cancer diagnosis), paired with Babrow’s (2001) chaining uncertainties, offers structure to the liminal space of the pre-diagnosis phase. Exploring patient experiences with dichotomous, chaining uncertainty can help scholars better understand unique intersections of uncertainty and information management when the potential causes and outcomes of troubling symptoms are both fraught and vast. This leads to our first research question:

RQ1:

How do individuals in the pre-diagnosis phase appraise uncertainty?

Information Management Surrounding Uncertainty and Cancer

UMT, along with other theories of uncertainty and coping, were instrumental to the development of TMIM. This highlights a reciprocal relationship between uncertainty and information management that can be challenging to tease apart but is ripe for exploration in the pre-diagnosis phase. When introduced by Afifi and Weiner (2004), TMIM presented a three-phase information-seeking model: interpretation, evaluation, and decision. The first phase, interpretation, focused on the discrepancy between one’s desired and actual levels of uncertainty. The strength of this discrepancy can lead to intense emotional responses and can drive efforts to manage such emotions. Afifi and Weiner (2004) originally argued that anxiety was the primary emotional response stemming from uncertainty discrepancies. Expansions of the theory have included other negative emotions, such as fear, guilt, and worry (e.g., Afifi & Morse, 2009; Afifi & Robbins, 2015), as well as positive emotions like “encouraged” and “secure,” particularly when individuals felt they had the appropriate amount of information desired (Fowler & Afifi, 2011).

Efforts to manage one’s emotional reactions shift individuals into the second phase: evaluation. During the evaluation phase, assessments of costs and benefits associated with information-seeking are processed in connection with outcome expectations and efficacy. As noted by Kuang and Wilson (2021), even when negative emotions lower outcome expectations and efficacy, “uncertainty discrepancy still may motivate people to seek information (e.g., to obtain advice or emotional support)” (p. 482). Based on outcome and efficacy assessments, decisions, the third phase, are made on whether to seek or avoid information.

In its original form, TMIM focused solely on information-seeking via interpersonal encounters, yet recent research has extended the theory to include all sources of content (e.g., Internet, media, clinical sources; Lewis & Martinez, 2014), as well as unintentional information acquisition (Hogan & Brashers, 2009). In a study of pre-diagnosis lung cancer patients, Wiljer and colleagues noted that information-seeking behaviors increased after the first healthcare visit, with the Internet being a significant source of information. Concerning information needs of testicular cancer patients, Yeo, Eigl, Chan, Kollmannsberger, and Ingledew (2021) found that 82% of the study sample used the Internet for cancer-specific information. Despite healthcare providers serving as an initial information source (Mayer et al., 2007), 70% of respondents in Wiljer et al. (2012) study reported that their provider failed to recommend useful resources, especially those focused on dealing with negative emotions during pre-diagnosis. One of the greatest patient desires at each stage of the cancer trajectory is personalized information (Park, Kim, Kim, & Katapodi, 2023), so any gaps experienced at the patient-provider level will likely drive increased online information searches.

Regardless of source, a challenge faced by those within the pre-diagnosis phase is potentially not being in the cognitive position to effectively receive and engage with information due to heightened negative emotional responses (Miles, Evans, & Taylor, 2021; Moseholm et al., 2016). Paired with exposure to conflicting, ambiguous, or excessive amounts of information (Hurley, Konsenko, & Brashers, 2011), information-seeking efforts can lead to feelings of information overload which serves to further hamper one’s ability to process information (Jensen et al., 2014). When information overload arises, cognitive reappraisals may occur that push feelings of indifference and lead to de-prioritization of information-seeking (Lillie, Katz, Carcioppolo, Giorgi, & Jensen, 2023).

Conceptualizing this link between uncertainty and information management during the pre-diagnosis phase, the following research question is offered:

RQ2:

How do individuals manage their uncertainty through the exchange of information during the cancer pre-diagnosis phase?

Method

This study received approval from Merrimack College’s IRB with identification number FY-17-18-175 in spring of 2018. It was reopened in spring of 2022. Upon receiving IRB approval, our research teams recruited participants who had undergone cancer testing (e.g., biopsy, bloodwork, CT scan, diagnostic mammogram) within the five years prior to the interview due to worrisome symptoms. Selection of the interview timeline (within 5 years) is informed by the theory of flashbulb memories (Brown & Kulik, 1977), which suggests that individuals maintain highly vivid long-lasting “snapshots” of personally surprising, consequential, and emotionally charged life events. Receiving news of a potential cancer diagnosis creates a “noteworthy memory” (Talarico & Rubin, 2017, p. 89), with emotional arousal extending the memory’s longevity.

The study’s first recruitment phase yielded mostly White participants, so the second recruitment phase focused on recruiting people of color. Because the pre-diagnosis phase is underexplored, we intentionally cast a wide net with regard to cancer type. The research teams utilized several diverse recruitment methods: flyers posted in a variety of commercial spaces and community nonprofits in the northeast, community newsletter submissions in several east coast towns, and social media posts. Participants were offered $20 gift cards in the first recruitment phase and $40 in the second recruitment phase. Although we specified that the cancer diagnosis could have been negative, all but two of our participants had at least one positive cancer diagnosis.

Participants

Fifty-five people (37 women; 18 men) participated in interviews either in person, through Zoom, or by phone.² The sample’s mean age was 48.67 years (SD = 16.29) at time of participation and 44.69 years (SD = 16.91) at time of diagnosis. Cancer types reported more than once within our sample included breast (n = 17), skin (n = 7), colorectal (n = 6), thyroid (n = 5), ovarian (n = 3), chronic lymphocytic leukemia (n = 4), lung (n = 2), lymphoma (n = 2), prostate (n=2), throat (n=2), bladder (n = 2), and bone (n=2).³ Of the 54 participants reporting a time span of their diagnosis (from observing concerning symptoms to receiving a definitive diagnosis), the range was 3 to 730 days, with a mean of 64.33 days (SD = 117.59). Removing the 730-day outlier, the average number of days for diagnosis was 51.27 (SD = 71.19).

Participants self-identified as White (n = 33), African American or Black American (n = 15), Hispanic (n = 2), White/Jewish (n = 2), Asian (n = 1), and Indian (n = 1). The majority of participants lived with a spouse/partner and dependents (n = 26), or spouse (n = 17). At the time of diagnosis, participants were either employed full-time (n = 30) or part-time (n = 10), were stay-at-home parents (n = 5), had retired (n = 5), or were unemployed (n = 4). The majority earned graduate (n = 20) or bachelor’s degrees (n = 20).

Procedure

Upon providing informed consent, participants completed a brief demographic survey and then answered interview questions about their diagnosis process, information sought/received, disclosures, social support, coping techniques, and advice for others. Interviews lasted 20 to 80 minutes and yielded over 430 single-spaced transcript pages. All interviews were audio-recorded and transcribed by a member of the research team or by the transcribing service Trint. Trint transcripts were audited by a research team member.

Data Analysis and Verification

Thematic analysis, which has a rich history within cancer-related health communication research (e.g., Bachman et al., 2018; Smith & Brunner, 2016), was utilized to tell a meaningful story from the extensive data. Themes were assessed for Owen’s (1984) qualitative standards of recurrence, repetition, and forcefulness. Through the process of initial coding and axial coding, the 2018 research team of two faculty and five students found two robust, interrelated codes: struggles with uncertainty and information management. These codes serve to mark our “landmasses of meaningful data from the surrounding sea of raw, uncoded data” (Lindlof & Taylor, 2011, p. 248). Within those codes, nuanced themes emerged regarding the emotions surrounding uncertainty and efforts at managing uncertainty through online searches or avoidance. After gathering additional interviews in 2022, the faculty researchers re-analyzed the data, discussed themes, and revised the results to include the broader uncertainties and additional information management strategies reported by patients of color. Member checks conducted in 2020 and 2023 asked interviewees to reflect on the synthesized findings. The study participants who responded offered no contradictions to the data and suggested that the findings have resonance.

Results

Temporal and Testing Uncertainties

The liminal space of the cancer diagnosis process was clearly unsettling for many interviewees, many of whom desired less uncertainty. Both Dustin (multiple myeloma)⁴ and Janine (colorectal cancer) used the phrase “up in the air” to describe their experiences. In Ashley’s (breast cancer) experience, the diagnosis process was “the most anxiety ridden part. Because you’re just teetering on a tightrope, 50 stories in the air.” These metaphors, and their connotations of height and distance from the earth, suggest that one could have safe passage back to the ground—or, alternately, plummet and break. These divergent outcomes happen because patients in the pre-diagnosis phase face a unique sort of uncertainty appraisal, one that we describe as dichotomous: On one hand, patients may test negative and go back to life as normal. On the other hand, they may receive confirmation of a life-altering illness, full of chaining uncertainty. Patients facing dichotomous uncertainty have the cognitive strain of not yet knowing what path they will be on, what information to seek to manage uncertainty, and what coping resources to marshal for the unclear path ahead.

The amount of time spent in the period of dichotomous uncertainty clearly mattered to several study participants, thus highlighting a temporal dimension of uncertainty management in the pre-diagnosis phase. One may expect that a patient would attribute more stress to a positive cancer diagnosis rather than a negative one. However, that was not the case for Allie (negative for thyroid cancer, positive for skin cancer). Allie had a lengthy wait (“a month or two”) to biopsy her thyroid but received a skin cancer biopsy in just a week. Allie described the skin cancer testing process as “far less agonizing” because of the condensed wait. Christine’s (breast cancer) radiological films were read “right away” when she lived in the northeast, but took several days after she moved to the southeast. Similar to Allie, Christine complained that, “the waiting is excruciating [… .] not knowing is just, you know, unnerving.” These self-reports are supported by quantitative studies indicating that timely diagnoses may reduce anxiety (Brocken, Prins, Dekhuijzen, & van der Heijden, 2012; Moseholm et al., 2016). When a nurse called George (melanoma) to set up a doctor’s appointment to go over his biopsy results, he knew something was wrong and bluntly asked, “So it’s malignant, right?” George’s desire to end the dichotomous uncertainty phase led him to violate communicative convention, extracting life-altering information from the unintended source. With efficacious information management (requesting and receiving the startled nurse’s answer to his question), George could stop teetering and start coping.

Many interviewees faced uncertainty discrepancies between what their doctors told them and what they wanted to know about diagnosis purposes or procedures. Providing only limited information could be a conscious health care provider decision to avoid worrying patients. Indeed, the pre-diagnosis phase has an amorphous start: patients can begin worrying about having cancer when they experience troubling symptoms, when a health care provider or other person suggests symptoms could be caused by cancer, or when a diagnostic test is scheduled. The earlier a patient starts worrying, the longer the pre-diagnosis phase. We have already presented evidence that lengthier pre-diagnosis phases are more unnerving to patients. However, affording patients the right to know what could happen, and to correspondingly manage information and support, can be seen as an ethical and potentially healthy pathway for patient/provider communication. Because Laila (breast cancer) had a misdiagnosis at the start of her troubling symptoms, her pre-diagnosis phase was lengthy. When she was finally tested for breast cancer, her doctor was very honest about what she “should expect” as a way of helping her “to be psychologically prepared.” Although various types and stages of cancer have different prognoses, Laila’s doctor reassured her, “whatever will come up that I can beat this.”

For Janine (colorectal cancer), part of feeling “up in the air” was that her health care provider did not tell her that cancer was suspected until “right before the biopsy.” The biopsy, Janine said, “would have been less stressful for me if I had more information.” Here we see a patient’s desire to reduce uncertainty-related anxiety through information management. Two women who underwent breast cancer testing recounted lingering resentment about not being thoroughly informed about biopsy pain. Grace (breast cancer) recalled, “[H]aving four [biopsy] needles in one day, not having a warning [… .] I was very upset when I left that day.” Maura (negative for breast cancer) recounted her health care provider underselling the procedure, saying, “Don’t worry. It’s just a needle.” Because of this message, Maura did not bring a support person with her for the procedure—a decision she regretted after encountering “a needle with a claw that comes out of the end, which is gonna drag tissue from deep inside your boob.” The whole experience, Maura said, was “profoundly traumatizing.” This theme is supported by Miller et al.‘s (2013) quantitative study showing that better communication with a radiologist reduced both pre- and post-biopsy anxiety for patients undergoing breast biopsies.

The previous examples of Grace’s and Maura’s uncertainty-related anxiety stand opposite to Robert’s (bladder cancer) experience: “my doctor was fantastic about basically telling me you know the whole process [… .]” In contrast to the adage “worrying means you suffer twice,” Grace and Maura wanted that worrisome information up front so they could appraise and manage uncertainty. Detailed information, the corresponding reduction in uncertainty, and the ability to prepare to cope before a diagnosis procedure, can mean the difference between “fantastic” and “traumatizing.”

Several patients of color—Carlos (skin cancer), Elijah (blood cancer), and Melissa (breast cancer)—did not know they were even being tested for cancer until their diagnosis was confirmed. In these cases, troubling symptoms (not knowledge about testing intentions) initiated the pre-diagnosis phase. This testing blind spot led Carlos to feel strong “emotion” and have a resulting inability to “hear what the doctor was saying” when being told he had cancer. Had he known about the testing, Carlos surmised, “I would have been prepared psychologically to know the outcome whether it is a yes or no.” The emotional noise and anxiety inherent in an unanticipated diagnosis made it more challenging for Carlos to process the medical information (see Rimal & Turner, 2009) and prepare for his next steps. The outcomes associated with Carlos’s testing blind spot are consistent with research addressing racial disparities in cancer diagnosis and treatment: non-White patients reported more problems accessing health information, accessing care, and coordinating care (Ayanian et al., 2005). A lack of access to timely and high-quality care was associated with higher morbidity rates for Black men diagnosed with prostate cancer (Dess et al., 2019). Not having necessary information during the pre-diagnosis phase is problematic in the short term but also likely contributes to negative health ramifications in the long run.

Overall, we saw a prominent theme of patients experiencing uncertainty-related anxiety when they knew they were being tested for cancer. Almost all patients wanted to reduce dichotomous uncertainty—to expeditiously find out if they had cancer or did not, irrespective of the result. Several study participants also retrospectively desired more information to reduce uncertainty about diagnostic purposes (what they were tested for) and procedures, particularly procedures that were painful or had an unclear purpose (i.e., patients didn’t know they were being tested for cancer). Uncertainty-related negative emotions could perhaps be reduced through patient advocacy and agency (e.g., George confirming by phone that his biopsy was malignant); however, the patients in distress implied that they had not always known what to ask about or advocate for.

Online Information Management

The pre-diagnosis phase was clearly uncomfortable for most patients. Information management was a key strategy for coping with that uncertainty and its related emotions. A core tenet of TMIM is that “the information-management process begins with individuals becoming aware of an important issue for which they desire more or less uncertainty than they have” (Afifi & Weiner, 2004, p. 174, emphasis in original). Looking for information may lead to new uncertainties (e.g., staging or different treatment options), and therefore be undesirable. In the upcoming analysis, we unpack several notable themes in how patients used information management to deal with uncertainty discrepancy. We also analyze how patients experienced the chaining of uncertainties, making decisions about how much information to pursue or avoid, depending on anticipated diagnoses. Participants were interviewed about information they received from a variety of sources, including healthcare providers; however, patient reports of seeking or avoiding online information were much more active and nuanced. Therefore, online information management is the focus of these results.

Symptom Symmetry

Several study participants, notably women of color, found symmetry between their symptoms and specific cancer symptoms they found online in the pre-diagnosis phase. Although research on health-seeking behaviors generally points toward White patients having greater access to and using the internet more frequently to search for symptoms (Finney Rutten et al., 2019), study participants here may have been compensating for discrimination and disparities in health care systems (Williams & Cooper, 2019) by asserting control over their diagnosis experience. Symptom symmetry related to divergent uncertainty appraisals and related emotions: anxiety for some study participants and a sense of agency for others. Nia (throat cancer) felt more certainty about her impending diagnosis, which was not a preferable state for her to be in: “You Google the symptoms and you have all of them and you panic.” Dominique (colon cancer) also felt “anxious and nervous and worried because my signs were matching with what I found in the website” before she had her cancer testing. Searching the internet alone, in a non-clinical and non-supportive setting, can lead to scary (yet still uncertain) probabilistic inferences.

For others, the anxiety at seeing connections between their symptoms and online cancer information propelled them toward a stronger sense of agency. Put differently, when dichotomous uncertainty was reduced (feeling that a positive diagnosis was likely), patients effectively managed information and marshaled resources to deal with the probable health risk. Describing her drawn out pre-diagnosis phase, Laila (breast cancer) said, “after going through several tests, and you know, really not getting the right diagnosis after that,” she went online to “diagnose myself, really.” Health care providers ultimately confirmed she had breast cancer, but Laila felt the need to reduce the extended uncertainty first through her own research efforts. Alicia was scared to even visit the hospital for testing. Reading online blogs helped her “to be certain of the situation.” She recalled, “The more I read about [cancer risk factors], [I] wanted to know more.” Alicia appraised chaining uncertainty in a positive way: diagnosis certainty led to relevant information seeking. That need to further reduce uncertainty through information management ultimately led Alicia to make an appointment for testing, thus bringing herself out of the liminal pre-diagnosis phase and into the diagnosis phase where life-sustaining action was possible.

“Hole” Metaphors of Information Avoidance

When engaged in the evaluation phase of TMIM (Afifi & Weiner, 2004), some patients made outcome and efficacy assessments that led them to avoid looking for online information. Ashley (breast cancer) purposely stayed away from internet research because “I [would] get trapped and go down this, you know, down the black hole.” The outcome assessment was negative (the information would not be helpful) and Ashley did not feel agentic (she would “get trapped”). Maura (negative for breast cancer) explained, “If I go down that rabbit hole, I may super freak myself out.” The “hole” metaphor suggests that the outcome of learning more online information would be increased uncertainty and additional “integrative dilemmas” (Babrow, 2001). The uncertainty of not knowing a diagnosis, staging, or treatment led to a dark (not illuminating) online space in which one might feel stuck. Staying away from the internet was a “coping mechanism” for Doris (breast cancer) who worried she “might have spiraled.” Doris’s efficacy assessment was that she would not have successfully coped with information found on the internet, hence her avoidance (see Afifi & Weiner, 2004). Elijah did not know he was being tested for blood cancer, but was glad he did not have the opportunity to look for online information, which “can make people go crazy.” He was content to “just let my doctor do his work.” Shirley’s (ocular melanoma) doctors were unique in telling her to just listen to them and not “see more scary things on the internet.” Throughout this theme, a negative pall hung over the internet, as captured in Karen’s (thyroid, appendix, and ovarian cancers) opinion that looking online for cancer information is “not a good thing because you always find the bad stuff.”

Tailored “Experiential Support”

Finding “bad stuff” on the internet implies the existence of “good stuff” as well. Clarice (bladder cancer) said that stories she found in the Bladder Cancer Advocacy Network (BCAN) “scared the heck out of me and a lot of them encouraged me.” As Dean and Davidson (2018) noted about previvors, uncertainty threat assessments “are intertwined with anxiety and worry but also hope and optimism” (p. 122; see also Brashers et al., 2000). Our findings suggest that, for many types of cancer, connecting with survivors online offers projective information (Hogan & Brashers, 2009) in the form of experiential support from someone who has first-hand information and insights (Snyder & Pearse, 2010). Gage-Bouchard, LaValley, Mollica, and Beaupin‘s (2017) study of Facebook communication among parents whose children had the same leukemia diagnosis found significant emotional support “through comparing experiences, empathy, encouragement, and offering hope” (p. 1238). Our study expands these findings to the cancer pre-diagnosis phase of the disease trajectory that is rife with dichotomous, chaining uncertainty.

The connection between the pre-diagnosis and post-diagnosis phases can be validating to pre-diagnosis patients who struggle to acknowledge or share their stresses because they do not want to put loved ones “through unnecessary worry” (Ruth, skin cancer). For many people facing a cancer diagnosis, reading stories from survivors of that same type of cancer or connecting with those survivors online provides a unique avenue to reduce uncertainty about coping with treatments and projecting their future quality of life (see Shaha, Cox, Talman, & Kelly, 2008). Whereas doctors can inform about averages and general information, real cancer survivor stories accessed online or told through digital communication may help patients in the pre-diagnosis phase to more readily envision themselves as survivors. Drawing from the teetering metaphor, if a patient does fall off the tightrope, the fall may lead to treatment and recovery instead of certain death.

Gwen (skin cancer) found support from online communities during her pre-diagnosis phase and then continued those relationships through the diagnosis phase. She recounted, cancer survivors in online communities “told me there’s a possibility that I’ll have cancer. That was before I got the diagnosis.” After she was diagnosed, Gwen took comfort in learning “how many years they’ve lived through cancer. They just encouraged me [… .] So, you know, I felt like I found a new family on social media. Having multiple people in similar situations” (emphasis added). James’ uncertainty shifted from suspecting he had an undiagnosed virus or infection causing his symptoms to getting diagnosed with chronic lymphocytic leukemia. The cancer diagnosis, he said, “never crossed my mind” and “was such a big surprise.” Right away, he sought online information from “people who have walked this road, how they managed it.” Before setting out on his own cancer treatment journey, James was able to learn from those who went through a similar experience. Online research brought Melissa (breast cancer) through a helix of negatively- and positively-valenced uncertainty and information management. She recounted that online information “at some point it intensified my level of being scared. At some point it made me feel I can manage this and have that positive attitude.” Once cancer is confirmed, dichotomous uncertainty is ended and chaining remains. Patients can thus engage in information management that (ideally) provides hope through targeted uncertainty reduction.

All interviewees sought valuable social support from close family, friends, and/or coworkers. However, several female patients—Patty, Ashley, Dominique, Brenda—were reluctant to disclose their cancer testing with friends and family for fear of worrying others or for seeming dramatic. Tailored online information and always-available support through social media had the positive impact of reducing loneliness created by non-disclosure. Facing her second melanoma diagnosis, Ruth noted that the online communities “helped to make me feel like I wasn’t alone dealing with it—cause sometimes I felt like I was the only one who had this exact same situation.” Theresa (breast cancer) appreciated that online support was “available 24/7” through a “Facebook group for people that had the same diagnosis.” The internet opened additional opportunities to communicate with certain strangers: notably, strangers who had the interviewees’ exact diagnoses or suspected diagnoses—and were willing to share their experiential support, including forecasts for a hopeful future.

Medical Research: Uncertainty Reduction and Agency

Several White study participants sought peer-reviewed medical research, primarily to mitigate ambiguity- and complexity-related uncertainties (Han, Klein, & Arora, 2011). Whereas ambiguity refers to the lack of credible, fitting information, complexity relates to the chaining of uncertainty because of many possible outcomes or options (Kalke, Studd, & Scherr, 2021). Brenda (lymphoma) dug into medical research herself because her type of cancer “was so rare I could tell that none of the doctors really knew what it was like. No one had information to give me about it.” Brenda desired less ambiguity-related uncertainty, and her health care providers were not in a position to close that uncertainty discrepancy for her. Jack (prostate and skin cancer), too, wanted to form opinions based on research when he was faced with a complex slate of treatment options for potentially slow-growing prostate cancer. He explained his mind-set this way: “Knowledge is power with cancer [… .] [Y]ou can’t just depend on the doctor.” Independently confirming information that doctors shared or treatment they recommended reduced patient uncertainty and increased their sense of self-efficacy, an expressed characteristic that is positively related to quality of life for cancer patients (Onyedibe, Ugwu, Nnadozie, & Onu, 2022). Lilian (lung cancer and bone cancer) reflected: “[The information] actually takes away a lot of the stress that’s involved because I feel like I’m armed, you know, I feel like I’m ready.” In these examples, we see uncertainty spurring on information acquisition, which correspondingly reduced uncertainty and enhanced a sense of power or agency. These early responses can be considered part of one’s “primary appraisal” of the cancer pre-diagnosis phase, a response that can impact the selection of future coping strategies (Link, Robbins, Mancuso, & Charlson, 2005).

Discussion

This study highlights the importance of researching the earliest stages of the cancer trajectory, when troubling symptoms appear but no diagnosis has yet been delivered. The pre-diagnosis phase is rife with uncertainty and uncertainty-related anxiety. Two types of uncertainty emerged from the data: dichotomous and chaining. The dichotomy of teetering (cancer/no cancer) harbors a breadth of chaining uncertainty related to potential testing outcomes and what comes next for the patient. Whereas the majority of patients desired to limit or close dichotomous uncertainty, they drew from several different types of information management strategies to cope with chaining uncertainty. This study contributes to qualitative health communication research in three notable ways. First, it builds on UMT by describing experiences with and management of dichotomous uncertainty. Second it expands understanding of the role of agency in TMIM through analyzing online information management strategies in the context of chaining uncertainty. Third, it advances understanding of the link between UMT and TMIM in the pre-diagnosis phase.

Dichotomous uncertainty is captured in the “teetering” metaphor and the participant descriptions of feeling “up in the air”—poised to potentially plummet or safely move along. The vast difference between the potential outcomes represents a unique form of uncertainty. The experience of dichotomous uncertainty may be analogous to other fraught medical diagnosis situations (e.g., learning one’s HIV status: positive, negative) or personal uncertainties (e.g., meeting with one’s boss after layoffs are announced: laid off, employed). This study’s analysis points to two additional, notable dimensions of dichotomous cancer pre-diagnosis uncertainty: temporality and testing uncertainties. In terms of temporality, participants showed a desire for uncertainty reduction rather than management. Put differently, they wanted to quickly be out of the pre-diagnosis phase. Longer waits between testing and results expanded the agony. Testing uncertainties (particularly related to pain) were also a source of distress and even trauma for patients, irrespective of their eventual diagnosis. Several patients of color were denied dichotomous uncertainty in that they were not told that were being tested for cancer. This crucial omission perhaps kept them from “teetering,” but also limited their ability to marshal social support, manage information before the diagnosis, and even process information when informed about the diagnosis.

During the pre-diagnosis phase, the various possible testing outcomes carry their own weight of copious information and additional uncertainties (e.g., treatments, underlying causes). The pre-diagnosis uncertainties are thus integrated chains rather than linear pathways. Many patients chose to manage chaining uncertainty through engaging with online information. These information management strategies were often associated with a sense of agency and a mix of emotions: hope, optimism, fear, shock. The data captured a sense of agency in several patients who found symptom symmetry online, who sought out experiential support, and who conducted medical research. Patients who either strategically avoided the internet or regretted looking online often drew from “hole” metaphors to capture a sense of helplessness. Using Babrow’s (2001) chaining uncertainty language, online information seeking could give rise to additional problematics.

Integrated lenses of UMT and TMIM in the pre-diagnosis phase reveal that uncertainty appraisals and related information management strategies can depend on the type of uncertainty (e.g., dichotomous, chaining). Patients who avoid seeking information may have a low tolerance for the variety of uncertainties rather than generalized uncertainties. In contrast, those who actively sought information or experiential support may be comfortable with chaining uncertainty—as long as the new information is seen as relevant. The texture, detail, and emotional connection of such disclosures can offer productive informational and social support. Additionally, medical research (including research revealing symptom symmetry) can help affirm that patients are pursuing the most salient forms of chaining uncertainty (i.e., they’re looking at a plausible diagnosis and relevant treatment options).

In terms of practical implications, health care providers, social workers, or patient advocates should coach patients to make more conscientious choices about uncertainty and information management strategies, along with other supportive care measures to reduce anxiety (see Liao, Chen, Chen, & Chen, 2010). Various diagnostic tools, such as the Intolerance of Uncertainty Scale (Freeston, Rhe´aume, Letarte, Dugas, & Ladouceur, 1994) could be useful when customizing support. Health care providers may offer advice about useful online resources, perhaps even providing journal access, or sharing individual articles. This suggestion dovetails with Cohen et al. (2016) assertion that by helping patients manage uncertainty, health care providers can then offer information that creates “less room for unproductive uncertainty to grow” (p. 36). We acknowledge that this can be a time-intensive process. If patients know that more or certain kinds of information will make them “spiral,” health care providers, patient advocates, or even friends and family can tailor the information provided accordingly—and also assure patients that there is no one best way to react to what they are going through.

Limitations and Future Research

The qualitative study was designed to take a broad look at communication experiences of people coping with a cancer diagnosis process. Recruitment of a diverse sample offered challenges, which prompted a second phase of data collection. While we were able to increase racial, gender, and cancer type diversity in the sample, we acknowledge the themes identified within related to uncertainty and information management may not hold constant in future studies. Of note, our sample was highly educated, which likely led to greater health literacy levels. This can positively influence one’s ability to navigate the health care system and search for relevant information. Future research should continue to emphasize the recruitment of patients of color, men, individuals who live alone, and people with varying education levels. These recruitment efforts could be facilitated by collaborating with varied health care practices, patient support organizations, and online communities.

Research focusing on one type of cancer could also illuminate unique experiences predicated on diagnosis procedure, potential treatments, prognosis, etc. Further, whereas interviewees’ recollections of their diagnosis experience within the last five years highlight their most vivid flashbulb memories, future research capturing participants’ experiences as they go through the pre-diagnosis process would be valuable in identifying a spectrum and temporality of emotions, uncertainty management, information management, and coping strategies.

Our qualitative study cannot make any claims about how information and uncertainty management map onto health outcomes. Additional research should be conducted to establish correlation and causality in terms of UMT, TMIM, and outcomes. There are different benefits and costs associated with managing information in the pre-diagnosis phase. Other TMIM research suggests that levels of uncertainty moderate uncertainty discrepancies, anxiety, and information seeking (Kuang & Gettings, 2021), and that age moderates uncertainty and information seeking (Kuang & Wilson, 2017). Additionally, our data suggests that repeated cancer diagnoses and perceptions of self-efficacy may impact uncertainty, information management, and emotional responses—for better and for worse. These variables all deserve additional examination in the pre-diagnosis context.

Conclusion

Participants in this study described their lived experiences with uncertainty appraisals and information management in the pre-diagnosis phase. Significant contributions of this project include the identification of dichotomous and chaining uncertainty features, pronounced reports of anxiety in the pre-diagnosis phase, divergent reactions to seeing one’s symptoms mirrored in online cancer information, racial disparities in information access, and customized online information management strategies through the cancer trajectory. These contributions form the basis of a wide-ranging set of recommendations for cancer communication researchers and health care providers who want to more effectively support patients in the pre-diagnosis phase. Findings underscore the need for greater clarity regarding pre-diagnosis uncertainty and information management variables, as well as their relationship to health outcomes.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by the Merrimack College Sakowich Center for Undergraduate Research and Creative Activities.

Notes on contributors

Lisa Glebatis Perks

Lisa Glebatis Perks is Professor of Communication and Media at Merrimack College.

Andrew C. Tollison

Andrew C. Tollison is Associate Professor of Communication and Media and Director of the Masters of Arts in Communication at Merrimack College.

Notes

1. We do not view pre-diagnosis testing to be inclusive of annual checkups or age-related cancer screenings. However, these screenings can prompt further testing that does satisfy our pre-diagnosis criteria (i.e., a troubling indicator has been observed and additional testing will be conducted).

2. One phone interviewee did not provide demographic information.

3. Some participants reported undergoing diagnosis processes for multiple types of cancer.

4. All participants have been given pseudonyms to protect their confidentiality. If they received a positive diagnosis, the type of cancer is listed next to their name. If they received a negative diagnosis, the language says “negative for x cancer” to indicate what they were tested for.