Research in Gerontological Nursing

Empirical Research 

“It Just Hit Me Like a Ton of Bricks”: Improving the Patient Experience of Receiving a Breast Cancer Diagnosis at an Older Age

Huibrie C. Pieters, PhD, DPhil, RN; Emily Green, PhD, RN; Miriam Sleven, MS, RN, OCN

Abstract

The purpose of the current study was to describe the experiences of older women receiving a diagnosis of early-stage breast cancer. Thematic analysis informed by techniques from constructivist grounded theory was used to analyze interviews with 54 women aged ≥65 years an average of 19.6 months after diagnosis. Two themes were identified: The Overwhelming Shock of Receiving a Diagnosis and Contextualizing the Diagnosis in Relation to Age. Results suggest these participants were deeply shocked by a diagnosis that clinicians may view as highly treatable. Age-related factors impacting how the bad news was received include misunderstanding risk factors, the impact of comorbidities, concurrent life events, and evolving perceptions of cancer at her life stage. To establish a solid foundation for age-appropriate communication when giving bad news, these participants help clinicians acknowledge what women may be thinking. Potential clinician responses to the variety of concerns are presented. [Research in Gerontological Nursing, xx(x), xx–xx.]

Abstract

The purpose of the current study was to describe the experiences of older women receiving a diagnosis of early-stage breast cancer. Thematic analysis informed by techniques from constructivist grounded theory was used to analyze interviews with 54 women aged ≥65 years an average of 19.6 months after diagnosis. Two themes were identified: The Overwhelming Shock of Receiving a Diagnosis and Contextualizing the Diagnosis in Relation to Age. Results suggest these participants were deeply shocked by a diagnosis that clinicians may view as highly treatable. Age-related factors impacting how the bad news was received include misunderstanding risk factors, the impact of comorbidities, concurrent life events, and evolving perceptions of cancer at her life stage. To establish a solid foundation for age-appropriate communication when giving bad news, these participants help clinicians acknowledge what women may be thinking. Potential clinician responses to the variety of concerns are presented. [Research in Gerontological Nursing, xx(x), xx–xx.]

It has long been known a breast cancer diagnosis can be particularly distressing as it carries a risk for emotional turmoil, psychological disruption, and physical disfigurement (Maguire, 1994). Despite public knowledge of great strides in successful treatment of breast cancer, recent findings confirmed the distress and other challenges that surround receiving the diagnosis (Campbell-Enns et al., 2017; Inan et al., 2016; Williams & Jeanetta, 2016). International literature pertaining to receiving breast cancer diagnoses showed that patient-centered, tailored, and empathetic communication leads to lower patient anxiety and higher trust in the clinician (Zwingmann et al., 2017), and directly influences patient decisions to continue or cease medical treatment (Sobczak et al., 2018).

Research on giving a cancer diagnosis entails what details should be addressed and how clinicians should convey the information (Attai et al., 2016; Fujimori & Uchitomi, 2009). Patient preferences for disclosure of bad news include their preferred setting, manner of physician communicating, what and how much information is provided, and emotional support (Fujimori et al., 2017; Fujimori & Uchitomi, 2009). Disparities between patient expectations and provider practices can negatively influence breast cancer patient outcomes (Diefenbach et al., 2009; Seifart et al., 2014). An important consideration when giving a cancer diagnosis is patient age and how that might impact the diagnostic experience and subsequent overall therapeutic relationship. Herein we focus on the population of breast cancer survivors age ≥65 years, as geriatric oncology generally remains greatly understudied despite the unique challenges of the interface of cancer and aging (Bellizzi et al., 2008; Hewitt et al., 2006; Institute of Medicine [IOM], 2013).

The prevalence of breast cancer is especially high among older women (44.5% of breast cancers are diagnosed in women age >65 years) (Howlader et al., 2020), but little is known about the diagnostic experience of older breast cancer survivors. Age-related factors have been found to strongly influence overall breast cancer treatment recommendations and decisions (Mustacchi et al., 2007). Outside of oncology settings, ageism (or negative views of age and aging) has been found to lead to significantly worse health outcomes all over the world (Chang et al., 2020). Many practical and psychosocial factors that impact treatment decisions and cancer experience set older populations apart from their younger counterparts. These factors include the impact of comorbidities and life expectancy; logistical problems, such as diminished hearing or vision; personal treatment choices versus family preferences; limited social supports; concerns about quality of life and adverse effects (Tahir et al., 2011; van Ee et al., 2019); impact on sexuality and well-being (Maree & Fitch, 2019); and lack of knowledge about the effectiveness of psychosocial interventions in older patients with cancer (Green et al., 2017; van Ee et al., 2017).

Oncologists have described feeling discomfort with older women who had early-stage breast cancer and reported communicating differently with this sub-population (IOM, 2013). Certain topics have been studied and found to be underdiscussed in clinical consultation with older adults, such as their perceptions about sexuality (Scalia, 2020) and sexual health (Malta et al., 2020), meanwhile nurses caring for oncology patients have also reported waiting for oncology survivors to bring up topics such as sexuality (Fitch, 2018). Older breast cancer survivors have also deemed it difficult to ask or seek out overall support later in the clinician–patient relationship (Yoo et al., 2010); we reason that it is critical to understand the experience of receiving a diagnosis for older women so providers and patients together can establish trust and a strong provider–patient relationship early on in the treatment process.

Therefore, as part of a parent study with a grounded theory design (Charmaz, 2014) to understand the processes of how older women received, interpreted, made decisions, and acted to persist or prematurely stop endocrine therapy (Pieters et al., 2019), our focus herein was to describe the complexities of participants' experiences receiving a diagnosis. The question we aimed to answer was: “What are the perspectives of women on receiving a breast cancer diagnosis?” Adding the voice of the understudied population of women aged ≥65 years greatly enhances age-related communication opportunities integral to establishing a therapeutic clinician–patient relationship.

Method

Constructivist grounded theory, a methodology that is strongly focused on social interactions and an individual's understanding of the world (Corbin & Strauss, 2015), and the later constructivist turn that posits there is no single reality (Charmaz, 2014) informed the research. Analysis was informed by techniques endorsed by constructivist grounded theory, such as iterative and line by line coding, field notes, and reflexive memo-writing about aspects such as researcher positionality (Charmaz, 2014). Thematic analysis (Braun & Clarke, 2006, 2019) was used to reduce the data into the most salient overarching themes.

Participants

Eligible women were aged ≥65 years when they were diagnosed with a first-time cancer, specifically loco-regional (Stage I, II, or III) breast cancer. Initial sampling was purposive to sample for heterogeneity. Later sampling was theoretical to include participants who could speak to stopping hormone replacement treatment at the time of diagnosis. Of the 57 eligible women who called, three declined because they were reluctant to release their medical records or were too busy.

Procedures

After approval from Institutional Review Boards, most participants were recruited through cancer registries with a personalized mailed letter. In addition, recruitment flyers were posted in oncology waiting areas and support centers. Recruitment continued until no new analytic properties were identified. Face-to-face interviews, with an average duration of 97.2 minutes, were conducted at a private place of the woman's choosing, usually her home. Using a semi-structured interview guide, the first author (H.C.P.), an expert qualitative researcher, conducted all interviews. Clinical data were derived from medical records.

Data Analysis and Management

Our three-person analysis team (H.C.P., E.G., M.S.) started the systematic analysis process by reading each transcript and making notes of initial ideas about all aspects of the content. We then independently performed line by line coding to generate initial codes across participants. Consistent with thematic analysis (Braun & Clarke, 2006), we immersed ourselves deeper in the data as we subsequently searched for themes by exploring how initial codes formed patterns across the data set. Then we reviewed, refined, and named the themes. During the analytic process, we discussed differences in opinion and reached consensus during regular meetings. Atlas.ti version 7.5.18 was used to manage the data.

Methodological and Analytic Rigor

Rigor was supported throughout the research (Charmaz, 2014; Creswell, 2014; Cypress, 2017; Levitt et al., 2018; Lincoln & Guba, 1985). Focus on confirmability was reflected in an audit trail that included self-reflective and analytic memos and field notes and considering negative cases that ran counter to emerging themes. Transferability was fostered by checking the verbatim transcriptions of the digital recordings for accuracy against the recording and analytic triangulation to limit biasing the findings. Trustworthiness was also supported by the neutrality of questions during the interview and our focus on adding usefulness to clinical practice.

Results

On average, the 54 women were aged in their early 70s and had received a diagnosis of Stage I breast cancer 19.6 months prior to interview. The majority of the sample (85.1%) correctly recalled their stage at diagnosis when it was compared to the stage documented in the medical record (Table 1).

Clinical and Demographic Characteristics (N = 54)Clinical and Demographic Characteristics (N = 54)

Table 1:

Clinical and Demographic Characteristics (N = 54)

More than one half (58%) of participants identified receiving the diagnosis as the unforgettable moment that stood out most in their overall cancer experience. Although on average their diagnosis was approximately 20 months prior to the interview, the shock of diagnosis was clearly recalled and described in depth by these women using language that conferred an emotional element, most commonly shock and surprise. Participants spent time recounting their experiences of being diagnosed and examined both their reactions and reasoning for these responses. Two overarching and interrelated themes surfaced about the inner processes of receiving an early-stage breast cancer diagnosis. The first theme entailed the intricacies of how shocking and surprising the diagnosis was to receive. The other theme explored contextualizing the diagnosis in relation to age. Table A (available in the online version of this article) presents these themes, subthemes, and supporting quotes about receiving a breast cancer diagnosis at an older age.

Representation of Themes, Subthemes, and Supporting Quotes about Receiving a Breast Cancer Diagnosis at an Older AgeRepresentation of Themes, Subthemes, and Supporting Quotes about Receiving a Breast Cancer Diagnosis at an Older Age

Table A.

Representation of Themes, Subthemes, and Supporting Quotes about Receiving a Breast Cancer Diagnosis at an Older Age

Shock of Diagnosis

The situation and nature of communication with the clinician who gave the diagnosis varied. For some women, the situation itself was traumatic, characterized by disorganized appointments and care, poor communication, and misdiagnoses, whereas others recalled great care and empathic clinicians. Four participants had a different diagnostic experience because they had felt a suspicious lump prior to the positive mammogram and realized breast cancer was a likely diagnosis. Regardless of the quality of their diagnostic experience, for most women the shock of diagnosis was overwhelming. Grappling with the shock and disbelief a woman recalled, “I just wasn't expecting it. It just hit me like a ton of bricks.” Other women also reflected on their disbelief as exemplified by a statement such as, “I never, never, never thought I would get cancer.” Fatalism was evident in the first thought a participant had on receiving the diagnosis, “This is the end of me.”

Reasons participants found the diagnosis unexpected included their compliance with mammography guidelines and history of negative results, their healthy status prior to diagnosis, and their lack of a family history and associated risk.

Compliance With Mammography Guidelines and History of Negative Results: “What Good Does It Do?” Most participants (50 of 54) were diagnosed subsequent to the routine mammograms that were part of their standard self-care activities. Mammograms were seen as a trusted screening tool that women prioritized and the majority of the sample received mammograms in accordance with the standard guidelines. However, several of these women attributed their shock of diagnosis to the fact they were compliant with recommended screening guidelines, were clear one year and cancer was reported the next year. One such participant expressed disappointment and disbelief because “I've been very good and very faithful. What good does it do? What good is it doing?” Another woman who also received recommended screening and was diagnosed with cancer that was not seen on her mammogram said:

It was not easily detected by a manual exam either. So, how do you protect yourself against something like that? I thought that I was safe. I had no predictive factors…. I had no clue that a screening mammogram just catches about 85% of cancers.

The discord between following clinical recommendations and still being diagnosed caused many to question or even feel betrayed by the medical system. This same concern was expressed when mammograms were missed due to changing clinical recommendations. Women described advocating for themselves to their primary physicians to increase the frequency of mammograms from every other year to annually when clinical recommendations changed. One woman shared she would have skipped the year she was diagnosed because her insurance started to pay only every second year. She insisted on her annual screening, her primary care provider agreed, she went for the mammogram, and was diagnosed with Stage I breast cancer. Therefore, the fact they were adherent and took initiative in getting annual mammograms and still got cancer contributed to the shock of receiving the diagnosis.

Healthy Prior to Diagnosis: “I Thought I'm Healthy.” Women referred to ways their lifestyle and life experiences made them unlikely to get cancer, such as their favorable health status prior to diagnosis, lack of symptoms, and their overall healthy lifestyle. In addition to living an active healthy lifestyle, participants recalled how the cancer itself did not cause any alarming symptoms in the time before being diagnosed. “Of course, it was a shock because I am healthy. I thought I'm healthy. I walk every day…and I didn't feel anything.” One participant exemplified the perception that a healthy lifestyle was a buffer against a breast cancer diagnosis when she recalled, “I follow a pretty good diet. I don't eat any red meat...and I take pretty good care of myself.... I've nursed two children. If you nursed your children that kind of made you less like[ly] to get breast cancer.”

No Family History: “No One In My Family's Ever Had Breast Cancer.” Awareness that family history was a risk for breast cancer led many women to include an absence of suchlike history as another perceived important reason why the diagnosis was unexpected. The abnormal finding on a routine mammogram was a “total surprise” for a participant because the women in her family “lived to be ancient, I mean 89, 90, 98, and nothing.” A participant who had actively searched her family tree sought to explain her own disbelief. She shared, “No one in my family's ever had breast cancer. I'm the 23rd grandchild on my father's side, and I've checked, and there's been no breast cancer.… So, I don't know what it was from.”

Thus, with few exceptions, participants' regular and previously normal mammograms, good health and healthy lifestyles, together with their perceived lack of a family history put them in a position to not expect the diagnosis of breast cancer and to instead be stunned, astounded, and in disbelief.

Contextualizing the Diagnosis in Relation to Age

Awareness of older age was evident in spontaneous discussions of age and its relation to a potentially life-limiting diagnosis. One woman was “surprised” how scared she was because she was 70 years old and saying to herself, “You're going to die; you're going to die.” Another commented, “I'm 72 and no one lives forever.” However, their higher age also helped two participants consider their cancer diagnosis in the context of having lived a long life, such as the woman who laughingly recounted that on receiving the bad news she thought, “I got to 83 years old, that's a lot more years than a lot of other people get. So, that's a blessing.” Her old age and long life guided her toward a more grateful and accepting perspective upon receiving the diagnosis.

Age-related subthemes illustrate the many complexities of what women were silently thinking when receiving the diagnosis. These thoughts included misunderstanding age as a protection against breast cancer, contemplating differences in a first-time diagnosis among younger and older women, consideration of other chronic health ailments, complexities of concurrent life events at the time of diagnosis, and societal changes related to the diagnosis over decades.

Misunderstanding Older Age as Protection: “I Figured I Had Passed the Time When I Would Be Getting Cancer.” Awareness of their higher age contributed to the shock of the diagnosis as many participants described getting cancer as something they thought they had “missed” or that they had lived so long without getting cancer, they surely would not be diagnosed now. This false sense of age as a protective factor was illustrated by a woman's comment, “Well, I was extremely shocked when I found the lump because at age 87 I figured I had passed the time when I would be getting cancer.” No participant verbalized that the risk of breast cancer increased with advancing age.

Cancer as an Older vs Younger Adult: “This is the Age to Get It.” Women were asked their perceptions of how breast cancer at a younger age would compare with being diagnosed at their age. Most women knew younger cancer survivors or someone who had died from the disease, including two participants who had lost their daughters to breast cancer. Resoundingly, participants all stated they considered cancer at a younger age to be more difficult. Currently, at an age health challenges were expected, they had adequate time for health care and appointments and believed there would be more disruption to family life for young mothers. This difficulty for younger people meant the disease “really interrupts” the lives of younger women. Evident across participants was the feeling physical appearance, specifically the loss of a breast, is more of an issue for younger women. Women also typically referred to breast cancer in younger women as more aggressive, having known younger women who had died of the disease. Thus, despite the shock of their own diagnosis, women described various ways a cancer diagnosis would have been more difficult to receive at a younger age while it was less disruptive for them to deal with it now as was concluded by the participant who said, “If I was going to get cancer, this is the age to get it.”

Comorbidities: “I'd Discounted Breast Cancer. I'd Crossed It Off My List...and Then It Came Up.” Overall, the current sample enjoyed good health with relatively few comorbid diseases. However, many women with comorbid conditions perceived the early-stage breast cancer diagnosis to be treatable and not as troublesome as other chronic conditions they managed at the time, such as atrial fibrillation and renal disease. One woman, who took nine prescription medications daily at the time of diagnosis and the interview, did not expect to die of breast cancer, but instead of cardiovascular disease because of her family history. She said “I'm lucky to have medications that are going to allow me to get old. So, I don't think cancer's the big deal.” For these older women, cancer was framed by other medical experiences over their lifetime.

Life Events: “Why Did It Have To Happen Then?” Women spontaneously situated receiving the diagnosis within what was happening in their life at that time. Participants had many roles and juggled multiple responsibilities. In addition to volunteering in a plethora of community organizations, some were involved with significant others in a caregiver role on a regular basis, such as a bedridden or frail spouse, and parenting grandchildren. For some participants it was “life as usual” when the diagnosis came out of nowhere and their already busy and ordered life became disordered. For others, the diagnosis coincided with another age-related life event, such as death of a spouse, a partner of many years, or a beloved parent. One woman whose daughter had just finished high school was impacted by the specific timing of the diagnosis. She was able to have the surgery timed:

…so I would have a few days with her and be able to be well enough to take her to college. So, it was a very big rush job for me…it was just an inconvenient time more than the horribleness of cancer, it was just so inconvenient. Why did it have to happen then?

Another woman who was the full-time “mother” of her orphaned granddaughter shared that her husband was actively battling advanced cancer when she was diagnosed. She described her surprise with her cancer diagnosis “because my husband having been diagnosed the year before, that I couldn't be sick while he was sick.” Thus, life stage and life events happening around the time of diagnosis deeply framed how participants received the bad news.

Things Are Different Now: “It's Not So Mysterious As What It Was.” Being age 65 years or older meant women in this sample had lived through decades of changing societal norms, clinical communication, and scientific advancements related to breast cancer. Women commonly considered that societal changes impacted how cancer was talked about when they were young versus now such as the participant who reflected, “People talk about it more openly, and it's not so mysterious as what it was.” When asked “If you think back to your grandparents, how was cancer and breast cancer (broached)?” she responded, “I don't know. I don't even know if anybody had it because nobody talked about it.” Participants who grew up in a country other than the United States, such as Brazil, Russia, and Japan, also noted a cancer diagnosis was never talked about.

Several women noted physician–patient relating and communication style was different when they were younger. One woman reported in the past she would “do what he [physician] said to do, because that was the way I was raised. You do what you're told to do.” She went on to point out that if today the physician told her “This is what you should do, period,” her response would now be, “‘You know, I appreciate what you're trying to do, but I need to think about it for a while’ and I would walk.”

The scientific advancements contributing to improvements in the treatment of cancer were also described. Genetic testing, an increase in the number and quality of available treatments, and developments in the effectiveness of the medications were identified as leading factors. One woman remarked “Cancer treatment has advanced so much since I was younger…. When you went in for the surgery, you didn't know if you were going to be having a breast.” Another woman, remembering seeing the mastectomy scar of a relative when she was younger, recalled the emotional legacy of that image when she was having the discussion about surgery:

Wow. That was so barbaric, the way they did things—women before were treated, like compared to now…. Wow. It's so different. I think that's why my breast was always so special to me. …I always was fearful of breast cancer since that.

Thus, having lived a long life, women often referenced a lifetime worth of experiences and knowledge related to cancer in relation to their own newfound diagnosis and experience.

Discussion

Our research aimed to describe older women's perspectives on receiving a breast cancer diagnosis to illuminate age-related communication opportunities in a clinician–patient relationship. The current study features a sample of older women who recalled a primary emotional reaction of profound shock when they received a diagnosis of early-stage breast cancer and goes on to highlight age-related contextual factors associated with their experience of receiving a diagnosis. Threads of disbelief, facing mortality, a false sense of trust, and questioning the cause of the diagnosis were woven throughout the data.

One main finding, and the first theme described above, is that with few exceptions, participants did not expect the diagnosis of breast cancer and were instead stunned, astounded, and in disbelief, similar to previous findings (Pieters et al., 2011; van Ee et al., 2019). Women in this sample attributed their shock to a disconnect between their good health and healthy lifestyles, lack of family history, and regular and previously normal mammograms. Our second theme highlighted factors unique to those in older age and found that although the medical community thinks of cancer as a disease of aging, these women were in shock due in large part to being uninformed of the risk brought on by age. This lack of information was taken a step further because participants thought of their older age as protective, even thinking they had “escaped” or “passed” the age for cancer. Given that our sample was mostly highly educated women, finding that participants were unaware of the overall age-related risk and overemphasized the protective impact of healthy lifestyles, screenings, and lack of family history was particularly surprising and underscores the long called for increase in age-appropriate mass media messaging strategies (Black, 1995). Although we have seen an increase in the available public information about breast cancer among older women, media has also been criticized for misrepresenting the age distribution of breast cancer (Burke et al., 2001). An earlier study conducted in the United States and the United Kingdom showed that the fear of a cancer diagnosis remains one of the most prevalent, unpleasant, and troublesome emotions associated with disease-related concerns (Vrinten et al., 2015), whereas our study suggests that older adults may not properly evaluate their risk in relation to breast cancer specifically. Therefore, sharing concrete information about age as a risk factor may be an effective tool for professionals working in oncology. For example, using comparative data from reputable sources, such as the National Cancer Institute (NCI), may allow women to more easily understand their risk.

Clinicians are uniquely positioned during the course of an illness, but especially during the crucial time of diagnosis, to correct misunderstandings, manage expectations, and support decisions to make the transition from understanding a bad-news diagnosis and its sequelae. Once a breast cancer diagnosis has occurred, understanding the new diagnosis to move forward with treatment is a complex and dynamic process. Evidence-based interventions that address distress symptoms, such as shock, may assist at influential moments and curtail potential maladaptive behaviors that can interfere with informed decision making and treatment. Use of empathic responses with the SPIKES (setting-perception-invitation-knowledge-emotions-strategy/summary) and NURSE (name-understand-respect-support-explore) models (van Vliet & Epstein, 2014) can assist practitioners to introduce a diagnosis and help patients move toward acceptance. Additional support can be provided through resource documents women can review at any time needed, such as the NCI (2019) publication “Adjustment to Cancer: Anxiety and Distress (PDQ®) Patient Version.” Women may benefit from all clinicians with whom they interface, whether or not they delivered the diagnosis, checking in and monitoring how they are processing the diagnosis, as shock may be fluid and not limited solely to the moment the woman hears she is diagnosed with breast cancer. Any clinician visits following the diagnosis could include a brief review of the woman's recall of her reaction to the diagnosis and her current state of acceptance and understanding.

Further support to understand the diagnosis can be provided by incorporating issues of older age and attendant life experiences. As highlighted in our second theme, there are unique complexities of receiving a diagnosis in older age, some of which clinicians may or may not be aware of and many of which can be used to support women's experiences. For example, at their age these participants had established functional habits of coping with life experiences and challenges and openly acknowledged that cancer at a younger age would be more difficult. Evidence suggests that as individuals age, emotional stability and regulation improve (Charles & Carstensen, 2014); therefore, older women are uniquely positioned to capitalize on past experiences and skills that can be used to help integrate their breast cancer diagnosis more smoothly, to take timely and appropriate action.

In addition, in our older sample, cancer was framed by other medical experiences over their lifetime. Although ours was a comparatively healthy sample, comorbidities are an increased consideration when oncologists are working with older adults (Tahir et al., 2011), especially those aged ≥80 years for whom quality of life is more greatly impacted by health and cognitive losses (Baltes & Smith, 2003). Participants positioned their breast cancer diagnosis and treatment against the risk and difficulty they associated with comorbidities; therefore, we would encourage clinicians to ask how this diagnosis compares to other events in women's lives, such as comorbidities, to more fully understand their lens on diagnosis and subsequent treatment decisions.

Women in the current sample also shared the impact of their family responsibilities and that the diagnosis interrupted, complicated, and/or had to be integrated into an otherwise full and busy life. This finding is congruent with national data reporting approximately 19% of 53 million adult caregivers to an adult or child with functional impairment are age ≥65 years (AARP & National Alliance for Caregiving, 2015), and custodial grandparents care for approximately 3 million children in the United States (Livingston, 2013). Clinicians need not dismiss the busy lives of older adults (van Ee et al., 2019) and instead need to investigate the logistical needs and barriers to facilitate appropriate supportive referrals.

An overarching unique contribution of age found in our study was the ability of these older adults to reference a lifetime worth of experiences and knowledge of cancer in relation to their own newfound diagnosis and experience. There is a plethora of occasions for misinformation, assumptions, and missed opportunities for information dissemination between older patients and providers. For example, having lived across generations of clinical recommendations, participants reported various understandings related to mammograms and screening guidelines, meaning ongoing education related to the importance of continuing mammograms and understanding publicized screening guidelines is a potential area of clarity that is needed for older adults.

More generally, regardless of age, the current study supports previous findings of the importance of patient-centered communication, which has been shown to be applicable in oncology and non-oncology settings and may be considered useful by nurses, physicians, and other clinicians across a variety of diagnoses (Sobczak et al., 2018). In fact, previous findings in studies with younger participants found patient-centered communication is critical during the disclosure of bad news due to its potential to impact anxiety or trust in the clinician (Campbell-Enns et al., 2017; Fujimori et al., 2017; Zwingmann et al., 2017). We believe this also applies to older populations and call for clinicians across the board to enhance their understandings of aging adults by incorporating the diversity of the aging population and the context of their lives into the process of giving a cancer diagnosis and embarking on the subsequent cancer treatment journey.

Implications for Practice

Individualized exploration by clinicians of the shock experienced at diagnosis and the age-related contextual factors that contribute may be needed to help women grapple with a potential life-ending diagnosis and provide a solid foundation for future collaborative care. In Table B (available in the online version of this article), we present potential clinician responses to the variety of concerns this sample identified during the interview that were evidently not communicated to the clinician.

Clinical ImplicationsClinical Implications

Table B:

Clinical Implications

All clinicians women encounter during the process of diagnosis have the potential to influence the successful integration of the new cancer diagnosis into their progress through to completion of treatment and long-term survivorship. It is incumbent on clinicians to listen, explore, answer questions, and provide support directly or through appropriate referrals to meet this goal. This new diagnosis brings new relationships with new members of the woman's health care team. Effective and open introductory meetings acknowledging the shock of this new diagnosis can help establish the communication pattern for a successful long-term relationship.

Although not a direct finding of the current study, clinicians need to be aware of this sample's misinformation and belief that breast cancer is associated with younger women, as this may stop older women from doing breast self-examination. The aging adult population needs to be aware of the ongoing importance for breast self-examinations and to consult with a clinician if they feel any changes.

Strengths and Limitations

Strengths of our research include the novel focus on the diagnostic experience of older women, the robust sample size of 54 participants, and the inclusion of provider-aimed supportive steps when delivering a potentially terminal diagnosis. A limitation of the study is the risk of recall bias in an interview-based study and suggests further studies could examine the implication of interim experiences on altering the retrospective evaluation of receiving the diagnosis. In addition, although we did not recruit for it, inadvertently this sample comprised mostly physically healthy and mobile older adults. Among older women who are less healthy, the influence of family members and comorbidities are likely more pronounced. Furthermore, a more diverse sample in every way (education/socioeconomic status, race/ethnicity, and geographical region) would lead to a more heterogeneous body of knowledge.

Implications for Research

With the increase in the number of women diagnosed in older age with breast cancer, increased research of older adults specifically and their experience and needs is warranted (Paul et al., 2009). The current study sheds light on a number of recommendations related to breast cancer screening. Future research to examine what, if any, barriers keep women from completing breast self-examinations and mammograms could assist clinicians to identify older adults at risk for non-screening behaviors. Another potential area of research may be investigating the diagnostic situation itself as imbedded in the larger experience of age for older and younger women, where disorganized appointments, unfamiliar clinicians providing the diagnosis, or mode of delivery (phone vs. in-person) may add to the aura of disbelief experienced by someone receiving the diagnosis. Comparing different age populations can serve to highlight uniqueness of older breast cancer survivors and age-related interventions. Longitudinal research that follows the health care team's relationship from the time of diagnosis through survivorship care may improve our understanding of the impact of delivering bad news on psychological and treatment outcomes. Lastly, as physicians and medical students showed increased physiological and psychological stress when breaking bad news (Studer et al., 2017), increased opportunities to improve effective communication skills are warranted (Monden et al., 2016), potentially focusing on the needs of specific age groups.

The current study brought to light an implication for settings where researchers are determining the best use of allocated research time. Compared with their medical records, the majority of our participants correctly stated the stage of cancer. This fact is impactful as checking the medical record for accuracy of self-reported stage of cancer may not be necessary for this population. In addition, this level of consistent recall validates women's ability to integrate diagnosis information and demonstrates they may not be overwhelmed to the point of missing vital information during the initial process of understanding the diagnosis.

Conclusion

Despite the average 19.6 months that had passed since these 54 older women received a first-time diagnosis of early-stage breast cancer, they spontaneously recalled how deeply shocked they were as the diagnosis was unexpected. Their surprise was grounded in four reasons. First, the participants were largely uninformed that the risk of breast cancer is brought about by age and actually thought that older age wards off breast cancer. They also described their healthy lifestyles, lack of family history, and compliance with mammography guidelines as protective factors. Implications for practice include that, although clinicians think of early-stage breast cancer as highly treatable, these women were profoundly shocked. Clinicians who interact with women throughout their cancer journey, in addition to the critical time of diagnosis, are well situated to assist them in identifying and reconciling misinformation and expectations to transform the experience of their cancer diagnosis toward a less distressing experience. Table B provides various clinical implications including the importance that older women continue to receive education about the significance of regular mammograms.

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Clinical and Demographic Characteristics (N = 54)

CharacteristicMean (SD) (Range)
Age at diagnosis (years)71.9 (6.09) (65 to 93)
Age at interview (years)73.4 (6.08) (66 to 94)
Months from diagnosis to interviewa19.6 (7.54) (8.2 to 44.8)
Mini-Mental State Examination29.4 (1.25) (24 to 30)
Charlson Co-Morbidity Indexa3.1 (1.21) (2 to 8)
Characteristicn (%)
Self-identification of race/ethnicityb
  White44 (81.5)
   Latina3 (5.6)
  Japanese3 (5.6)
  Chinese2 (3.7)
  Korean1 (1.9)
  African American1 (1.9)
Marital statusb
  Married24 (44.4)
  Widowed16 (29.6)
  Divorced10 (18.5)
  Separated2 (3.7)
  Never married2 (3.7)
Education completeda
  High school graduate9 (16.7)
  Some college7 (13)
  College graduate19 (35.2)
  Some graduate school5 (9.3)
  Graduated from graduate school14 (25.9)
Employment status at interviewb
  Retired41 (25.9)
  Employed10 (18.5)
  Let go/laid off2 (3.7)
  Never employed outside the home1 (1.9)
Currently volunteeringb
  No31 (57.4)
  Yes23 (42.6)
How cancer was diagnosedb
  Routine mammogram40 (74)
  Breast self-examination6 (11.1)
  Clinical breast examination3 (5.6)
  Other5 (9.3)
Breast cancer stagea
  I35 (64.8)
  II15 (27.8)
  III4 (7.4)
Setting of treatmentb
  NCI-designated comprehensive cancer center21 (38.9)
  Private practice15 (27.8)
  Community medical center10 (18.5)
  HMO7 (13)
  Clinic1 (19)
Family history of cancerb,c
  Mother
    Breast cancer3 (5.6)
    Other cancers4 (7.4)
  Sister
    Breast cancer2 (3.7)
    Other cancers0
  Daughter
    Breast cancer2 (3.7)
    Other cancers0
  Other family
    Breast cancer9 (16.7)
    Other cancers13 (24.1)

Representation of Themes, Subthemes, and Supporting Quotes about Receiving a Breast Cancer Diagnosis at an Older Age

Shock of Diagnosis
Compliance with mammography guidelines and history of negative resultsWoman diagnosed with a tumor not detected on her mammogram:I've been very good and very faithful. What good does it do? What good is it doing? The mammogram didn't detect it …that really bugged me a lot, to think about all the women that are going and they're faithful, and what good is it? I had had a mammogram the year before, I'm not clear exactly, although I can guess why they didn't catch it at Stage 0 except for the fact.it was behind a structure that would've obstructed. I'm maybe surprised that they found it at that stage, Stage 1. But it could've been found at Stage 0 the year before quite possibly. My doctor said this thing had been growing for three to four years… I'm very good about going and getting my mammogram every year. What good does it do? The mammogram didn't detect it until it got so big because it was a straight tumor and they're hard to detect. And so that really bugged me a lot, to think about all the women that are going and they're faithful, and what good is it?.. So I was just kind of angry about that. A diagnostician said, “You know, this has probably been developing for a long time.” And she said, you know, “Have you been having your annual mammograms?' And I said, “Yes. I've had one every year.”
Healthy prior to diagnosisWhen I was first diagnosed, I was really shocked because these things just don't happen to me. [chuckles] I've been very, very healthy, and this just doesn't happen to me. You don't think of it for yourself. You hear other people getting cancer. And I always figured I was so healthy, nothing would happen. I always had my mammograms on time and never a smoker, really not a drinker, was doing everything right and then get hit upside the head by it. Of course, it was a shock because I am healthy. I thought I'm healthy. I walk every day, I live on the ocean, and I didn't feel anything.
No family historyI'll tell you what my reasons (for being shocked) were. Well, number one, I don't have a history of any breast cancer in my family. I breastfed two of my kids, my parents doesn't have breast cancer. I don't know what's wrong.
Contextualizing the diagnosis in relation to age
Misunderstanding older age as protection(I was) surprised that I, at my age (77), got it ... I mean, in the back of my head, I think I thought I was past everything. I thought I was going to be healthy.
Cancer as an older versus younger adultAt my age, it's easier to accept things, sort of hardship of life. Whatever life throws a curve on you, okay. So, this too shall pass. [laughs] Especially in younger people's eyes, you know, you're almost an asexual person.
Co-morbiditiesI had three strokes in 1997 in a two-day period. And I was completely paralyzed on my left side. And I had to learn to walk and everything again. And I lost the center vision in my right eye. And I figured that was going to be the problem I would have in my lifetime because there were so many people who'd had strokes on my mother's side. So, I'd discounted breast cancer. I'd crossed it off my list. I wasn't going to have to deal with that. [laughs] Crossed it off my bucket list, and then it came up.
Life eventsI was looking forward to retirement. In fact, I had given my notice for retirement in July… And three weeks later (after retiring), I was diagnosed with breast cancer. And I'm going, “Is this fair?” [laughs] So, you know, I was thinking about retirement. I was thinking about having a life and having fun.And I didn't really want to dwell that I had cancer.
Things are different nowSometimes women tell me that way, way past, when they were younger, that there would be a doctor who takes care of everything. But now you sort of have to step up and take care of yourself.

Clinical Implications

Patient Expressed or ExperiencedClinician Implications
Shock or disbelief at breastcancer diagnosis

Ask questions to elicit patient's personal understanding of the diagnosis with special attention to what she has heard about aging and breast cancer.

Assist women to verbalize reason for shock or disbelief within the context of their personal experiences and provide psychosocial support and information as needed.

Evaluate if shock is compromising woman's ability to make decisions and move forward on cancer journey.

If appropriate, relate shock in this situation to previous life experiences with unexpected events with the goal to explore how she managed those stressful events.

Specific misconceptions such as being protected from breast cancer through mammogram compliance, living a healthy lifestyle, advancing age or having no family history

Explore possible misconceptions and knowledge deficits related to being diagnosis with breast cancer at an older age.

Reinforce understanding of recommended screening guidelines as they pertain to continuing mammograms and breast self-examinations to ensure continued value of health monitoring as she continues to age with a history of breast cancer.

Encourage her to identify previous examples of self-advocacy in the healthcare system for herself, a family member of a friend. Reinforce the importance of self-advocacy in our present-day healthcare system.

Make appropriate referrals to members of the multidisciplinary team as needed for patient education, support, or other needs. Implement geriatric assessment tools as indicated to identify potential barriers and develop management strategies.

Challenges incorporating current life responsibilities into treatment plan, such as caring for grandchildren or ill spouse

Explore and expand upon the woman's current life responsibilities as she incorporates the new diagnosis. For example, discuss how the caretaking responsibilities for her frail spouse may affect the woman's ability to keep treatment and follow-up appointments.

As necessary, work with other members of the healthcare team to assist with assessing current responsibilities to ensure adequate and appropriate access to care and development of a supportive environment. For example, in the presence of sensory loss or inability to commute to appointments, implement mutually acceptable alternatives such as accessing local senior care transportation services.

Challenges reconciling her knowledge of breast cancer as experienced by others in her past with her current experience

Ask questions to elicit patient's understanding of the difficulties faced by other women diagnosed with breast cancer from her past.

Compare and contrast past and present diagnosis and treatment strategies, as appropriate, to assure understanding of current treatment plan.

Challenges establishing relationships with treating oncologist and care team

Identify potential communication barriers, such as hearing loss or cognitive issues that may contribute to the quality of the relationship. Mutually develop strategies to mitigate recognized age barriers.

Invite the patient or an accompanying family member, to discuss age-related cultural sensitivity. For example, ask a woman from a minority culture about any potentially relevant traditions and customs related to a receiving treatment for breast cancer as an older woman that might impact communication with her healthcare team.

Periodically revisit patient-clinician relationship to assure continued effectiveness and evaluate for any recent or advancing age-related changes.

Authors

Dr. Pieters is Associate Professor, and Dr. Green is Research Assistant, School of Nursing, University of California at Los Angeles, Los Angeles, and Ms. Sleven is Cancer Survivorship Program Coordinator, Torrance Memorial Medical Center, Torrance, California.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This work was supported by the National Cancer Institute (Pieters, R21CA167218-01A1).

The authors' gratitude extends to the 54 women whose narratives are represented here.

Address correspondence to Huibrie C. Pieters, PhD, DPhil, RN, School of Nursing, University of California at Los Angeles, Factor 4-956, 700 Tiverton Avenue, Los Angeles, CA 90095; email: hpieters@sonnet.ucla.edu.

Received: April 25, 2020
Accepted: September 09, 2020
Posted Online: January 25, 2021

10.3928/19404921-20210115-02

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