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Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social networks, and health care response

Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social... J Cancer Surviv (2009) 3:223–232 DOI 10.1007/s11764-009-0098-x Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social networks, and health care response Nelli Boykoff & Mona Moieni & Saskia Karen Subramanian Received: 22 July 2008 /Accepted: 18 August 2009 /Published online: 16 September 2009 The Author(s) 2009. This article is published with open access at Springerlink.com Abstract Results Our data indicate that cognitive impairment can be Introduction Mild cognitive impairment following chemo- problematic for survivors, with many asserting that it is therapy is one of the most commonly reported post their most troublesome post treatment symptom. Survivors treatment symptoms by breast cancer survivors. This report diminished quality of life and daily functioning as a deterioration in cognitive function, commonly referred to result of chemobrain. Respondents detail a range of coping as “chemobrain” or “chemofog,” was largely unacknowl- strategies that they are forced to employ in order to manage edged by the medical community until recent years. their social and professional lives. Discussions/conclusions Chemobrain significantly impairs Although chemobrain has now become the subject of more vigorous exploration, little is known about this specific a proportion of cancer survivors, at great cost to them economically, emotionally, and interpersonally. This sug- phenomenon’s psychosocial impact on breast cancer survi- vors. This research documents in-depth the effects that gests that more research needs to be conducted on the cognitive impairment has on women’s personal and psychosocial ramifications of post treatment symptoms in order to inform the efforts of the medical and mental health professional lives, and our data suggest that greater attention needs to be focused on this arena of survivorship. communities as well as the support networks of survivors. Methods The results are based on an in-depth qualitative Implications for cancer survivors A better and broader understanding of the effects of cognitive impairment both study of 74 white and African American breast cancer survivors in California who experience post-treatment side in the medical community and among lay people could pave the way for improved social and psychological effects. The data reported herein were obtained through the use of focus groups and in-depth interviews. services for this population. . . Funding for this research was provided by the Susan G. Komen Keywords Breast cancer survivor Chemobrain Foundation . . Chemotherapy effects Cognitive impairment Psychosocial Qualitative N. Boykoff Mayo Medical School, Rochester, MN, USA Introduction M. Moieni UCLA Center for Culture and Health, University of California, Los Angeles, An increasing number of women survive breast cancer. Of Los Angeles, CA, USA the 11.4 million cancer survivors in the United States alone, female breast cancer survivors represent the largest popu- S. K. Subramanian (*) lation at 23%, or 2.6 million women [1]. Although breast Department of Psychiatry and Biobehavioral Sciences, UCLA Center for Culture and Health, Semel Institute, cancer is the second leading cause of cancer death in University of California, Los Angeles, women, mortality rates have declined steadily since about 760 Westwood Plaza, Box 62, Los Angeles, CA 90024-1759, 1990 [2]. However, survival may come at a cost for some, USA as biomedical researchers have begun to acknowledge that e-mail: saskia@ucla.edu 224 J Cancer Surviv (2009) 3:223–232 cancer treatment itself (surgery, radiation, chemotherapy) the previous 10 years. The study indicated that cognitive can result in long-term physiological damage, which in turn deficits were still present even a decade after treatment and can vastly impact quality of life. One post-treatment side that patients treated with adjuvant chemotherapy were effect that has received growing medical attention is popularly much more likely to perform poorly on neuropsychological referred to as “chemobrain.” This condition encompasses a tests than patients who had undergone local therapy only. A range of symptoms such as memory loss, inability to later study by Castellon et al. [9] further confirmed these concentrate, difficulty in thinking, and other subtle, cognitive previous findings, again reaffirming that chemotherapy changes. Although the severity of cognitive difficulty varies negatively impacts neurocognitive functioning. among patients, the slightest deterioration in cognitive Since 2004, the number of studies investigating post- function can be devastating for the patient’s quality of life treatment cognitive impairment has significantly increased. [3]. It is currently unknown exactly how many breast cancer In 2005, Shilling et al. [10] published the preliminary survivors suffer from this condition, and anecdotal evidence results of their longitudinal study of patients who had suggests that the phenomenon may even affect a broad array received chemotherapy and compared their cognitive of cancer survivors beyond those who experienced breast function to that of healthy controls. Of the chemotherapy cancer. Although some current biomedical cancer studies do patients, 34% showed a decline in cognitive function versus seek to understand the nature and etiology of chemobrain, 18.6% of the control group. In 2006, Bender et al. [11] there is a dearth of information about its psychosocial found that women who received chemotherapy exhibited ramifications—how do individuals suffering from this deteriorations in working memory compared to the control condition experience the symptoms? How does it impact group. Another 2006 study [12] evaluated subjects’ their lives and functioning? To what extent is their daily cognitive function before chemotherapy and 6 months after experience compromised? completing chemotherapy; 25% of the subjects exhibited A growing body of research examines cognitive dys- cognitive decline from the baseline cognitive test. Accord- function in breast cancer patients who have undergone ing to a 2006 article by Raffa et al.[13], chemobrain’s standard-dose chemotherapy. A study by Wieneke and existence has been “well established,” even if a direct Dienst [4] analyzed 28 participants who were treated for causal relationship has not been indisputably proven. Thus, early-stage breast cancer with either CMF chemotherapy, many in the medical community have generally accepted CAF chemotherapy, or a combination of the two. A series the existence of post-treatment cognitive impairment, of neuropsychological tests were performed in order to although the mechanism of the phenomenon is still determine any affect on cognitive functioning. Their results unknown. Since 2007, numerous studies have sought to indicated that 75% of the participants suffered from uncover this mechanism, and the exponential growth in cognitive impairment on one or more neuropsychological research investigating chemobrain will undoubtedly contin- tests. A study conducted by Schagen et al. [5] of thirty-nine ue in the coming years [14–18]. breast cancer patients treated with adjuvant (CMF) chemo- It should be noted, however, that although numerous therapy showed that 28% had deficits in the areas of studies have shown cognitive dysfunction in patients who concentration and memory versus 12% of the thirty-four have undergone chemotherapy, many of these studies did patients in the control group who did not receive adjuvant not assess the baseline cognitive function of patients before chemotherapy. Van Dam et al. [6] correlated the level of they underwent chemotherapy. In fact, a 2004 study that did cognitive impairment with the dosage of adjuvant chemo- assess baseline function found that 35% of women therapy. Their results showed that 32% of patients who had demonstrated cognitive impairment before the initiation of undergone high-dose chemotherapy were affected adversely chemotherapy for their breast cancer, underscoring the with respect to cognitive functioning while only 17% of the importance of establishing pre-chemotherapy baseline patients who were given a standard dose of chemotherapy cognitive functioning to accurately assess whether or not were adversely affected, demonstrating a dose response chemotherapy is indeed responsible for their cognitive rate. Brezden et al. [7] surveyed 3 groups of women: group decline [19]. Additionally, some studies researching chemo- A consisted of breast cancer patients undergoing adjuvant brain have concluded that there was no statistically chemotherapy, group B consisted of women who had significant difference in domains such as attention, cogni- finished chemotherapy treatment on average of 2 years tion, or language between breast cancer patients who ago, and group C consisted of healthy controls. Women in received chemotherapy and those who did not [20, 21]. both groups A and B suffered more cognitive dysfunction Another study looked into the relationship between self- than those in group C; furthermore, group A proved to have reported and objective cognitive dysfunction in breast greater cognitive deficits than group B. Ahles et al. [8] cancer patients treated with adjuvant therapy. It found that reviewed the cases of breast cancer or lymphoma survivors self-reported memory and concentration problems were who had been diagnosed and treated with chemotherapy in actually associated with psychological distress, rather than J Cancer Surviv (2009) 3:223–232 225 true cognitive decline as assessed by objective cognitive Methods testing [22]. Data from more recent studies suggest that chemobrain may be more complex in its etiology, caused The overarching investigation from which these data are not solely by chemotherapy treatment but potentially also drawn was designed as an exploratory pilot study that precipitated by the “impact of surgery and anesthesia, investigated post-treatment side effects of breast cancer hormonal therapy, menopause, anxiety, depression, fatigue, survivors, detailing the range of symptoms, how women supportive care medications, genetic predisposition, comor- manage these symptoms, and the effects these symptoms bid medical conditions, or possibly paraneoplastic phenom- have on women’s personal and professional lives. These enon” [23]. Cited as problematic in this body of research is data were obtained from 74 women through the use of the lack of standard measures of cognitive impairment and focus groups and in-depth interviews. small sample sizes. Certainly, overall, while there is no Adult subjects were at least 1 year beyond completion of definitive understanding of chemobrain, there is consensus adjuvant radiation and/or chemotherapy (some were con- that there is yet a need for large, multi-center studies to tinuing with Tamoxifen therapy). Recruitment occurred further explore this phenomenon. through the distribution and posting of flyers at various Although the controversy over chemobrain persists, cancer wellness centers, physicians’ offices, and support survivors continue to report post-chemotherapy cognitive group meeting sites. Flyers, approved by the UCLA changes, and a significant body of research validates the Institutional Review Board, included the following text existence of cognitive impairment experienced by breast (formatted and with graphics): cancer survivors subsequent to chemotherapy. A 2005 Are you a breast cancer survivor who has completed meta-analysis of chemobrain literature concluded that radiation or chemotherapy at least a year ago? Do you cognitive impairment was indeed a reality for many breast currently experience any sensations you believe may cancer survivors who underwent chemotherapy [24]. be related to your treatment, like fatigue, arthritis, Indeed, the health care community has already begun an memory loss, pain, or others? If you answered yes, examination of chemobrain’s effects on patients’ lives. A then we would like the opportunity to speak with you. 2005 article by Matsuda et al. [25] recognized that the We are a UCLA based research team studying the “principle negative effect” of this mild cognitive impair- range of post-treatment experiences of breast cancer ment was “deterioration of quality of life.” Citing a 2001 survivors. We are also interested in understanding how article by Bender et al. [26], Matsuda et al. noted that the people cope with post-treatment discomforts. most devastating effects are “for patients who hold professional and social positions.” Despite the observation Respondents to the flyers were pre-screened by phone. The final sample included 36 African Americans and 38 Whites. that cognitive impairment can have devastating effects on the personal and professional lives of women, there has Women were eligible to participate in focus groups and/or been little discussion about the psychosocial ramifications interviews; a total of 74 women were interviewed, and 20 of this condition. Both national and international media participated in both the focus groups and interviews. Since have become increasingly alerted to the quality of life respondents self-selected for the study based upon their problems that women with cognitive impairment experi- subjective assessment of their post-treatment conditions, this ence [27, 28], and commercial products have been is perforce a skewed sample. Given that we were conducting manufacturedtohelppatientswithchemobrain[29]. an exploratory investigation, however, we felt that the short- However, despite the media attention on the subject, only comings of this recruitment strategy were acceptable and a small number of medical journals have detailed the direct would allow us to access subjects most efficiently. effects of cognitive impairment on the lives of breast cancer At the beginning of our research, we conducted four focus groups (6–8 participants each) in order to collect patients [22, 30, 31]. There is, therefore, a paucity of literature focusing solely on the psychosocial effects of preliminary data and help refine our interview instrument. chemobrain, and our paper is one of the few in-depth Subsequently, we conducted one in-depth interview (ap- descriptions of the psychosocial ramifications of chemo- proximately 1–3 h in length) with each interview subject. brain in the words of cancer survivors. Such literature needs Included in the interview instrument were sections eliciting to be available not only for breast cancer survivors, who data about the patients’ medical background and treatment may seek reassurance and often voice a longing for experience, the nature of their post treatment symptoms, validation of their cognitive symptoms, but also for nurses reactions from medical personnel and from family and and physicians, who need to better understand the sorts of friends, the patients’ self-management of the symptoms and changes their patients may be undergoing during and after the reactions of their providers, the strength of their social chemotherapy so that they can be informed and compas- networks, and their evolving perceptions of self. To elicit sionate providers for their patients. data regarding symptoms, respondents were asked to self- 226 J Cancer Surviv (2009) 3:223–232 report whether they were experiencing any from an treatment; of these symptoms, cognitive impairment was extensive list; since the term “chemobrain” was then and one of the most frequently documented (70%). Other is still unfamiliar to some survivors, we queried about studies of breast cancer survivors report a wide range of cognitive impairment by asking separately whether they prevalence of this specific symptom, typically from 10– experienced loss of words, forgetfulness, memory loss, or 40%. A University of Rochester Medical Center study of chemobrain. Interviews and fieldnotes from the interview 595 cancer survivors across the US, however, reported a visit were tape recorded and transcribed. rate of 76% 6 months after completion of treatment [33]. Qualitative data were entered into computer files as the Effects of this condition were wide ranging and considered research progressed. Data in these forms consist of large most troublesome by respondents. The following sections verbal texts that must be interpreted, organized, and summa- delineate the experiences of survivors in our study who rized using some text based analysis technique. A number of were living with cognitive impairment. These experiences such techniques exist [32] which differ primarily in how the are discussed in terms of the general psychosocial influence original texts are coded for subsequent sorting and organi- of the symptoms, impact on interactions with medical zation. The technique most appropriate to our data and providers, ramifications on social networks, consequences research goals is ethnographic content analysis referred to by to work and economic well-being, and coping strategies Crabtree and Miller [32]as template text analysis. Essential- employed by these women. ly, this technique involves the creation of a code book based on variables identified by the researcher at the beginning of General descriptions of chemobrain/psychosocial impact the study as relevant to the research questions and goals. Texts are read and codes are assigned to relevant portions of A variety of cognitive changes experienced by respondents the text and entered. Code categories can be revised, in our study were defined as “frustrating” and “upsetting.” expanded, and created as the research progresses. This Some women described being frightened by their dimin- requires that coding proceed from the very beginning of ished ability to retain material or to digest new information the research and that previously coded materials are updated and recognized that they were not functioning as they once as the coding is refined. The codes were ultimately managed did. using HyperResearch software. & You have to fight to make yourself remember numbers, The process of coding allows for the thematic analysis of words, places that you go. Sometimes I would leave the data. Of some concern, however, is the validity of qualitative house to go somewhere and I really couldn’t remember data that have been processed by a single researcher. To how to get there… it almost made me break down address this, the use of multiple coders has become a more because of the fact that you think you’re losing your common practice in qualitative studies, as has the consensus mind. based review process which allows a group of coders to & …I can remember just sitting there and thinking, ‘My regularly review their identification of themes and codes. This brain is just absolutely dead. I don’t think I’ll ever be study employed the skills of four trained coders in addition to able to think again.’ And finding it very frightening… I input from the project director and the principal investigator. do remember almost being panicked that I would never The entire research team met on a bi-weekly basis during the be able to think of words again, [that] I wouldn’t coding process and divergent ratings were assessed and function. discussed. In having a number of coders identify both the & …it’s not like I’m suddenly acting retarded or a dull themes found within the texts as well as the representative normal. I’m still able to function. It’s just the fine quotes illuminating these themes and in subjecting the process degree of memory or the speed at which I’d be able to to scrutiny by our entire team in a group setting resulted in a recall information. carefully constructed and analyzed dataset. & I can’t read technical books anymore. I just don’t Though our sample is relatively small for any sort of understand them. I’ll read the same page over and over complex quantitative analysis, we did enter quantifiable and over again and it just doesn’t make sense. So I can’t data into an SPSS database and compiled descriptive self-teach the way I used to be able to…I [also] don’t univariate and multivariate statistics. Table 1 details various read philosophy books anymore. I don’t read books demographic and treatment data. about politics or historic analysis or critiques. My reading is a lot lighter. Other women faced diminished independence, becoming Results limited in their ability to manage certain responsibilities or get around. These types of changes led women to feel Women in our study reported, on average, 15 discrete, scared, dependent, and emotionally drained. chronic symptoms that they attributed to their cancer J Cancer Surviv (2009) 3:223–232 227 Table 1 Descriptive data of respondents (N=74) Table 1 (continued) Variable Valid % Variable Valid % Age Cancer treatments 30–39 2.8 Surgery 100.0 40–49 22.5 Radiation 76.3 50–59 42.5 Chemotherapy 77.6 60–69 21.1 Hormone therapy 72.4 70–79 8.5 80–89 2.8 Ethnicity & What I have to do sometimes is have my son come over White 51.4 and pay my bills. Can you imagine? It really makes me African American 48.6 feel bad…I’ve been so independent and here I am at Marital status 55 years old and I can’t pay my bills. And the money’s Married 38.6 there. Divorced 31.4 & I just felt like I was getting scared that I would hurt Separated 5.7 myself…I [couldn’t] remember if I looked at a Widowed 10.0 stoplight. I felt like it was putting myself at risk. Single 10.0 & I have been so lost [while driving], I just pull over, and Unmarried, living with partner 2.9 break down, and start crying. Because it’s places I’ve Other 1.4 been before and I know where I am going. It’s terrible. Number of children 0 20.6 Responses from the medical community 1 14.7 2 36.8 One significant complaint that a majority of the interviewed 3 17.7 women voiced was the lack of acknowledgement by the 4 4.4 medical community when they complained about various 5 5.9 symptoms of chemobrain. One respondent raised the issue of Education level doctors’ attitudes toward cognitive impairment with the Less than HS 0.0 women in her support group, and they concurred that doctors HS 11.4 “poo-pooed” the condition and said, “‘oh no there is no such Some college 37.1 thing.’” Another respondent became increasingly frustrated College graduate 25.7 when no one on her medical team could seem to agree about Postgraduate study 22.9 what was happening to her: “it seems like most of [the Other 2.9 doctors] are very insensitive, not all of them, but a lot of them Total family income just seem to not be able to hear what you are asking. Like I Less than $10,000 9.0 talked with maybe 6 radiation oncologists, and not one of $10,000–14,999 6.0 them was agreeable to telling me what was going on.” Other $15,000–19,999 9.0 women reported that their doctors blamed their memory $20,000–24,999 4.5 problems and other cognitive dysfunction on age; one $25,000–29,999 4.5 participant said, “I talked to my doctor[s] about [the memory $30,000–34,999 3.0 loss and loss of words] and what I would get was, ‘You’re $35,000–39,999 10.5 getting older.’ I mean, they sit there and give the odd nod to $40,000–49,999 13.4 the fact that there was cognitive impairment but that I should $50,000–59,999 3.0 be fine.” $60,000–74,999 16.4 Many women wished they had received some warning. More than $74,999 20.9 As one woman put it: “I really think it’s the responsibility Employment status of the physicians to acknowledge or to inform people that Unemployed 45.7 you might have a short term memory.” Another stated, “… Full-time 41.4 you know, I wish that whether it’s a doctor or a patient care Part-time 12.9 coordinator or somebody, would sit down with a patient and talk to them [and say] ‘You know, you may not get it, 228 J Cancer Surviv (2009) 3:223–232 but these are some of the things that happen… just be Though this is the type of validation many women are aware, so that you don’t get frightened that you are losing it seeking from their physicians for their symptoms, few in or aren’t meeting everybody’s expectations.’” our study received it. This left many of them frustrated, It is important to note that a smaller number of women scared, and unsure about what was happening to their did receive validation from their physicians when they minds. brought up the various symptoms associated with chemo- brain. How quickly doctors acknowledged patients’ symp- Reactions of family and friends toms, however, varied. For example, Lucy, a high school graduate with two grown children, waited a long time: The reactions of family and friends after the onset of symptoms vary from apathetic to supportive. Janet, a My oncologist…finally admitted that chemo does married mother of two, said her family did not take her affect your brain…he finally said it…all this time… complaints about her cognitive changes seriously, making he, you know, denied it… [I felt] vindicated because I her feel helpless: knew my body. I knew that I was much more forgetful than I ever was, and I don’t think that it I wish I could really talk to somebody who could would have been this enhanced just by age and…what really validate what I’m saying because my family, I had been sharing, and not so much complaining they kind of laugh. I feel that sometimes I desperately about, but expressing concerns about, was finally struggle to remember things. I don’t know who to talk acknowledged by my oncologist. to. I’ve told everybody, but nobody [is offering any kind of help]. Another participant reported that her doctor simply Another woman, Tammy, a divorced mother of two, stated that the cognitive dysfunction she was experiencing was a condition termed chemobrain, but offered no advice. reported that her teenage son, as well as others around her, She stated, “I talked about [my symptoms] with my began to challenge her authority: oncologist and she said, “that’s chemobrain”… [but] she Trust me, your children will take advantage of you really [hadn’t] suggested doing anything about it.” Jackie, a because they’ll say, ‘but that’s not what you said married mother of two, worked part-time. She fretted: yesterday mom’…and I’m like, ‘yeah, I think I said [My oncologist] noticed that I wrote on my hand, my that.’ And I had to stop saying ‘I think I said that’… notes, and he said, ‘what are you doing that for?’ And I that was giving people [a window.] Everybody was go, ‘you guys did this to me. I don’thave my memory coming back and telling me, “well, you didn’t say anymore.’ He goes, ‘well, do you think you have that.’ Yes, I did. That sounds like something I would chemobrain?’ I said, ‘yeah…does it go away? Does it have said… get better? Does it get worse? What’s the deal?’ And he Several women acknowledged that chemobrain confused says, ‘we really don’tknow.’ And I think that’s the case. their families and friends, especially young children. For I think they really don’t know. That’s why nobody’s example, one mother reported that her loss of words was a sending you anywhere [for treatment.]. source of confusion for her children, who would often say, One woman reported a positive experience with her “mamma, what’s wrong with you?” Even many adults nurse and physician: could not understand the extent of the cognitive changes. Sharon stated: …I started to describe to her my sort of mental, I don’t know what to call it, cognitive issues maybe… If I’m out and I’ll say something to someone, ‘oh And I started to mention this… [to] the nurse and she gosh, I’m sorry my memory’s not really great.’ just interrupted me and said, ‘oh chemobrain… People…say the silliest things in response. They don’t think that you’re really meaning it. They’ll everybody gets that.’ And I said, ‘well, what are you talking about?’ And then once she started talking think, ‘oh, mine too, oh whatever.’ But you're just to me about that, then I felt oh ok, this is something like, ‘no really, I really...it’s just not even funny.’ And that other people share and this can get better. I didn’t that’s hard. I think that’s really hard. feel like I was going crazy or a sense of isolation Sharon also reported that her friends seemed afraid when about it or anything and then the doctor came in and her symptoms seemed especially severe: we talked about it again. And we talk about it now when I go in. So I don’t feel a sense of hostility from The brain is bad, the brain is embarrassingly bad. the medical profession or anything like that about it. I People that know me, I’m fine with. They all understand because they just have kind of gotten just feel that it’s an under researched area…. J Cancer Surviv (2009) 3:223–232 229 used to it. Though I think some of them are kind of think about it…I have to call downtown to make sure I afraid because sometimes it is really bad. Certain days [am] doing the right thing…There’s…hesitance…So I have are better than others…But it’s embarrassing… to call [downtown] a lot; I call them almost everyday…I wasn’t like this before.” Another participant, a secretary, noticed: “I get frustrated easier. You know, I feel more Money and work stressed, like I’m at the counter and I’m working, you know, doing the filing, then all of a sudden, sometimes I Chemobrain can affect job performance. Because the ability draw a blank, like, what do I do next?” Charlotte, a single to focus diminishes, duties become more difficult and often mother whose income supports two children, was forced to take longer to perform. Carrie, a school teacher, was a quit her job and find one with a lighter workload. As a married mother of two teenagers at the time of her result, her salary fell dramatically. diagnosis. After her first chemotherapy treatment as well as a mastectomy, she and her husband divorced. After her When I was diagnosed, I was the project manager for treatment, Carrie felt she was easily distracted at work: a $24 million government project retrofitting military aircraft. I had thousands of engineering drawings and I find myself getting day dreamy. I am like the ADD concepts in my head. I had names and phones kid: [I] can hyper-focus as long as [I am] doing one numbers [and] figures. I had a mind like a steel trap. thing, but if something walks by down the hall, [and] For the first three or four years after treatment I was I see it…I am gone. It makes my job a lot harder totally useless. I couldn’t even remember people’s because as a teacher you have to do everything all at phone numbers… I’m still probably more efficient once. So when I leave at the end of the day, I am than the average fool, but I know that I’m different, spent, when before I was energetic. And it’s not a which is one of the reasons that I’m working...a much physical spent; it is a mental spent that I didn’t used to less demanding job. I don’t need to have the kind of have. technical expertise that I did in [my previous] Respondents reported decreased efficiency and speed at position. So, I have the earning potential that’s about work, thus reducing their chances of being promoted or $25–$30,000 less. And as a single mother of two assigned to projects, as they and their employers realize that children that becomes a real issue… And I have my they are no longer able to handle the level of work they sister who is a physician and friends who have MBAs were accustomed to pre-cancer treatment. Mary, a Pacific from UCLA like I do who say, ‘…You could do Bell employee, thought that “I got passed over for anything. You don’t have to have a job at this salary. opportunities and [didn’t get] the chances I would have You’re earning nothing.’ And I’m thinking, ‘you normally gotten for advancement.” She believed that this know what? I’m really grateful to be earning anything was due to her memory loss, which she said was starting to at this point.’ affect the quality and speed of her work. Another woman, Harriet, a married mother of three, was the manager of a Jill, a divorced mother of one, reported having to lie to her large office. She took early retirement as a result of her previous boss: cognitive impairment: The memory loss… has sometimes been fairly I went into retirement because of the cancer, simply significant. Certainly in my last job, my boss would because I could not maintain the level of work that I say, ‘remember that document we did last week?’…I was used to…They came to me for everything. I had a would say, ‘I think I remember. Give me a few more big responsibility and I enjoyed it…after the cancer clues. Well, let me look.’ And sort of try and fake it and going back to work, I couldn’t sustain that. Every and hope that I would come up with the right thing. 2 hours, I was going somewhere to sit down and relax and could not think well…I couldn’t coordinate Memory problems also often increased stress, especially everything that was going on. I couldn’tdoit in a professional environment. Laura, a post-doctoral anymore…With this memory thing I was very frus- research fellow, felt nervous conversing with colleagues trated at work and so I thought that I can’tgoonlike after her symptoms started to become severe: “…it was a this. It was a chore now going to work than a joy. I just very sharp decline when the treatment started…I’m very assessed the situation and said that it’s not worth it. insecure when I’m talking to people professionally because I’m worried I’m just going to draw a blank.” Karen, a typist Chemobrain also affected women who were job hunting. and clerk, became more hesitant about completing the work Some reported more severe symptoms in stressful situations she was assigned and often called headquarters for like interviews. Others realized that such symptoms as clarification: “When I’m working at a situation I have to memory loss prevented their ability to find employment. 230 J Cancer Surviv (2009) 3:223–232 Laura, for example, stated: “I’ve been job hunting the last Other women tried to counteract the effects of chemo- 3 years and it’s extremely stressful to go to interviews therapy by keeping their minds active. One respondent knowing that I have these memory issues…I’m just not as started doing problems out of the workbooks that she sharp as I was…I used to be able to think on my feet really bought for her niece: “…I do a lot of the math and the well, and that’s gone, that edge is just totally gone now.” cognitive problems…And I find if I keep my mind moving Women attempting to complete degrees in order to (re)enter and learning that it’s getting better.” Katherine considered a the job market were also disadvantaged by chemobrain more drastic step: “I have a long-term project… going back symptoms. Emily noted: to school… And I think the more I push myself, the more I will gain back. I mean, I have heard that the people do get I started going to school about the same time as I brain function back and there [is] a lot of research that, in started my cancer treatment…I’m studying French… fact, brain cells do [regenerate]….” It feels so different to me from how I was before… For some, coping means having to significantly curtail It’s as if I can’t grasp what the teacher is saying. I work and social activities. Charlotte, who took a lower paying listen very carefully. I concentrate, but I feel like it job to reduce stress, decided to avoid certain social occasions. doesn’t get into my brain. It feels like something isn’t “Idon’t put myself in situations where I have to worry about quite working in my brain the way it used to…it’s my memory or ability. I don’t think I’d go to a fancy party at harder for me to process new verbal material. It seems the Music Center with my friend who is a composer even to be a verbal intake problem on that level…and I though she has invited me because I don’t think I’dbeable to watch the other students and I see that it’s different for handle the conversation. I think I’m quieter than I used to be.” me than it is for them. Other women, however, have more or less accepted the Laura suffered a major setback when writing her disserta- limitations that the cognitive impairment puts on their lives tion because cognitive impairment affected her ability to read. and resigned themselves to a diminished cognitive capacity. After having worked as an attorney for 15 years, managing a Laura has come to terms with her memory loss: “Idon’teven law firm in a major Midwestern city, she quit her job and bother to listen to people’s names anymore because I know I enrolled in a PhD program, during which she was diagnosed won’t remember them. So I don’teven try…” Maryanne, a with breast cancer. She described herself as once being college graduate and mother of one, simply told people that ambitious and competitive, yet after her first year of treatment, she had memory problems, so if they want her to remember she no longer had that same drive. She stated, “…When I something, it is their responsibility to remind her: began the chemo…Icouldn’t concentrate at all and I couldn’t I’ve just made [my memory] into a game. I don’t worry read for about the first year. I think I read one novel during that about it if I don’tremember…I tell people up front that I entire time. I read no academic material. I couldn’twork. I don’t remember well, so if it’s something important to couldn’t write. The following year I needed to finish my Ph.D. [them], [I tell them to] call me several times. With my and it was…extremely hard, and I felt I couldn’t concentrate daughter, I’ve told her that she is very important to me, adequately.” but I don’t remember well. If it’s important, you have to send it to me in a letter so I can put it on the refrigerator Coping or tell it to me time and time again. I tell her that if I don’t remember it, I’m not going to let [her] beat me up Women devised various ways to deal with the symptoms of because I didn’tremember it…so even though my chemobrain. Some kept journals to record everything they memory is very bad, I don’t let it get me down and I just needed to do. One participant used calendars: “…Ihave to turn it around and make it comical and do other things write down an awful lot to make myself remember. My with it... even though I know it’smajor. calendar is filled up with what I should and shouldn’tdo each day, so I can keep up with things.” Another woman reported: Another woman stated, “At the support group, we joke “I have Post-its all over my refrigerator, all over my mirror and about it and call it chemobrain. We write each other notes everywhere.” In fact, the most common method used by so we don’t forget to say things and it’s just the way it is.” women is Post-its, with some covering walls in their homes As another woman put it, “I hold on to the moment because with reminders for typically mundane tasks such as “turn off I don’t have the ability to hold on to memories.” the gas” or “remember to close front door.” Still others trained themselves to put objects, such as keys, in specific places. One participant stated: “…when I get out of the car, I tell myself to Discussion secure the keys, make sure you put the keys in the right place. When I get home, I immediately put the keys in a specific The qualitative data discussed in this paper underscore the place. I misplace everything.” very serious ways in which chemobrain can affect the life J Cancer Surviv (2009) 3:223–232 231 experiences of cancer survivors. Chemobrain is only one of assessment of these women are not sensitive enough to the many post-treatment symptoms that survivors of cancer detect the changes in functioning that they experience. The experience. Thus, although medical science has developed stories we gathered in our interviews show the various adequately aggressive cancer treatments that result in changes in memory, concentration, and thinking ability that greatly diminished mortality from the disease, the cures they have experienced since chemotherapy. The fact that may be adversely affecting the lives of survivors. Research certain assessments cannot appreciate these changes does continues to unfold in this arena, especially as researchers mean not they do not exist; this is why in-depth interviews of try to discover the specific mechanisms behind chemobrain survivors are important. Such reports are necessary to show and other post-treatment symptoms, and the mass media the true cognitive impact of chemotherapy and to help guide have begun to widely acknowledge the phenomenon, the development of measures that can detect the cognitive increasing society’s awareness of the condition. This changes these women describe. Downie et al. [31] state that progress in both the scientific community and in society many measures of cognitive assessment, such as the High at large is crucial to the understanding of chemobrain and Sensitivity Cognitive Screen, are not relevant to daily its psychosocial effects. functioning and describe a 1999 study by Sbordone and A clear understanding of the cognitive impairments Guilmette which showed that few neuropsychological tests experienced by survivors through detailed interviews and “had been designed to simulate real life situations and that no documentation will aid researchers in developing targeted assessment adequately predicted everyday function.” Thus, therapies and interventions aimed at improving or mitigat- interview data, such as ours, are critical in highlighting ing these post-treatment side effects. It is difficult to truly exactly why we need to develop neurocognitive batteries that understand the life changes these women have undergone can better detect subtle changes in cognitive functioning. without hearing first-hand accounts of their experiences. This study, however, does suffer from several limitations. A Data obtained from questionnaires cannot fully convey the larger sample size drawn from a random, national pool of experience of cognitive limitation and its relationship to survivors would help to clarify the experiences of the broader daily functioning as perceived by the survivor herself the population of survivors; this study, as a pilot, relied upon a way an in-depth interview can. Without these more detailed non-random sample that self-nominated for the study and that accounts, it is difficult for the nurses, physicians, and self-reported cognitive impairment. The inclusion of more researchers working with these patients to obtain a full empirical measures of cognitive function administered both understanding of the clinical picture necessary to develop pre- and post-treatment, albeit potentially limited in their ability effective interventional strategies. It is also essential to to fully assess the scope of cognitive decline, would have added educate family members, as well as survivors themselves, an additional layer of useful data in our quest to understand the extent and impacts of chemobrain. Future studies should also that the cognitive changes being seen are not unexpected or uncommon in a chemotherapy population, thus helping purposively include women of other ethnicities beyond the survivors and their families cope by reading the accounts of African American and Caucasian women included here. others experiencing a similar reality. Our study also points As more and more people survive cancer long term, and out that the need for spreading awareness and developing our understanding of these phenomena improve, the amelio- effective interventions and therapies is not purely for the ration of post-treatment quality of life for survivors will pose a emotional and psychological well being of survivors, but significant challenge. Central to informing this effort will be for economic purposes as well. The impact of cognitive greater knowledge through expanded research in this field and changes on the financial stability of patients and their a heightened focus on the interplay between chronic con- families can be quite significant as seen in the accounts of ditions such as chemobrain and resultant life experience. our study participants. Many women are unable to function at the same level professionally, to complete their educa- tions, or to keep their jobs, thereby profoundly affecting their financial security, particularly if they are the sole Open Access This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which per- providers in their households. mits any noncommercial use, distribution, and reproduction in any Despite the large number of women who report medium, provided the original author(s) and source are credited. cognitive impairment and functional decline, several papers have published data suggesting that there is a discrepancy between the cognitive decline women perceive and what References objective cognitive assessments show [21, 31]. This does not mean that breast cancer survivors are overestimating 1. National Cancer Institute. Estimated US cancer prevalence. their degree of cognitive impairment, but rather, may mean Updated May 13, 2009. 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Available from http://www.urmc.rochester.edu/pr/News/story. et al. Adriamycin-mediated nitration of manganese superoxide cfm?id=1141. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Cancer Survivorship Pubmed Central

Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social networks, and health care response

Journal of Cancer Survivorship , Volume 3 (4) – Sep 16, 2009

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© The Author(s) 2009
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1932-2259
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1932-2267
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10.1007/s11764-009-0098-x
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Abstract

J Cancer Surviv (2009) 3:223–232 DOI 10.1007/s11764-009-0098-x Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social networks, and health care response Nelli Boykoff & Mona Moieni & Saskia Karen Subramanian Received: 22 July 2008 /Accepted: 18 August 2009 /Published online: 16 September 2009 The Author(s) 2009. This article is published with open access at Springerlink.com Abstract Results Our data indicate that cognitive impairment can be Introduction Mild cognitive impairment following chemo- problematic for survivors, with many asserting that it is therapy is one of the most commonly reported post their most troublesome post treatment symptom. Survivors treatment symptoms by breast cancer survivors. This report diminished quality of life and daily functioning as a deterioration in cognitive function, commonly referred to result of chemobrain. Respondents detail a range of coping as “chemobrain” or “chemofog,” was largely unacknowl- strategies that they are forced to employ in order to manage edged by the medical community until recent years. their social and professional lives. Discussions/conclusions Chemobrain significantly impairs Although chemobrain has now become the subject of more vigorous exploration, little is known about this specific a proportion of cancer survivors, at great cost to them economically, emotionally, and interpersonally. This sug- phenomenon’s psychosocial impact on breast cancer survi- vors. This research documents in-depth the effects that gests that more research needs to be conducted on the cognitive impairment has on women’s personal and psychosocial ramifications of post treatment symptoms in order to inform the efforts of the medical and mental health professional lives, and our data suggest that greater attention needs to be focused on this arena of survivorship. communities as well as the support networks of survivors. Methods The results are based on an in-depth qualitative Implications for cancer survivors A better and broader understanding of the effects of cognitive impairment both study of 74 white and African American breast cancer survivors in California who experience post-treatment side in the medical community and among lay people could pave the way for improved social and psychological effects. The data reported herein were obtained through the use of focus groups and in-depth interviews. services for this population. . . Funding for this research was provided by the Susan G. Komen Keywords Breast cancer survivor Chemobrain Foundation . . Chemotherapy effects Cognitive impairment Psychosocial Qualitative N. Boykoff Mayo Medical School, Rochester, MN, USA Introduction M. Moieni UCLA Center for Culture and Health, University of California, Los Angeles, An increasing number of women survive breast cancer. Of Los Angeles, CA, USA the 11.4 million cancer survivors in the United States alone, female breast cancer survivors represent the largest popu- S. K. Subramanian (*) lation at 23%, or 2.6 million women [1]. Although breast Department of Psychiatry and Biobehavioral Sciences, UCLA Center for Culture and Health, Semel Institute, cancer is the second leading cause of cancer death in University of California, Los Angeles, women, mortality rates have declined steadily since about 760 Westwood Plaza, Box 62, Los Angeles, CA 90024-1759, 1990 [2]. However, survival may come at a cost for some, USA as biomedical researchers have begun to acknowledge that e-mail: saskia@ucla.edu 224 J Cancer Surviv (2009) 3:223–232 cancer treatment itself (surgery, radiation, chemotherapy) the previous 10 years. The study indicated that cognitive can result in long-term physiological damage, which in turn deficits were still present even a decade after treatment and can vastly impact quality of life. One post-treatment side that patients treated with adjuvant chemotherapy were effect that has received growing medical attention is popularly much more likely to perform poorly on neuropsychological referred to as “chemobrain.” This condition encompasses a tests than patients who had undergone local therapy only. A range of symptoms such as memory loss, inability to later study by Castellon et al. [9] further confirmed these concentrate, difficulty in thinking, and other subtle, cognitive previous findings, again reaffirming that chemotherapy changes. Although the severity of cognitive difficulty varies negatively impacts neurocognitive functioning. among patients, the slightest deterioration in cognitive Since 2004, the number of studies investigating post- function can be devastating for the patient’s quality of life treatment cognitive impairment has significantly increased. [3]. It is currently unknown exactly how many breast cancer In 2005, Shilling et al. [10] published the preliminary survivors suffer from this condition, and anecdotal evidence results of their longitudinal study of patients who had suggests that the phenomenon may even affect a broad array received chemotherapy and compared their cognitive of cancer survivors beyond those who experienced breast function to that of healthy controls. Of the chemotherapy cancer. Although some current biomedical cancer studies do patients, 34% showed a decline in cognitive function versus seek to understand the nature and etiology of chemobrain, 18.6% of the control group. In 2006, Bender et al. [11] there is a dearth of information about its psychosocial found that women who received chemotherapy exhibited ramifications—how do individuals suffering from this deteriorations in working memory compared to the control condition experience the symptoms? How does it impact group. Another 2006 study [12] evaluated subjects’ their lives and functioning? To what extent is their daily cognitive function before chemotherapy and 6 months after experience compromised? completing chemotherapy; 25% of the subjects exhibited A growing body of research examines cognitive dys- cognitive decline from the baseline cognitive test. Accord- function in breast cancer patients who have undergone ing to a 2006 article by Raffa et al.[13], chemobrain’s standard-dose chemotherapy. A study by Wieneke and existence has been “well established,” even if a direct Dienst [4] analyzed 28 participants who were treated for causal relationship has not been indisputably proven. Thus, early-stage breast cancer with either CMF chemotherapy, many in the medical community have generally accepted CAF chemotherapy, or a combination of the two. A series the existence of post-treatment cognitive impairment, of neuropsychological tests were performed in order to although the mechanism of the phenomenon is still determine any affect on cognitive functioning. Their results unknown. Since 2007, numerous studies have sought to indicated that 75% of the participants suffered from uncover this mechanism, and the exponential growth in cognitive impairment on one or more neuropsychological research investigating chemobrain will undoubtedly contin- tests. A study conducted by Schagen et al. [5] of thirty-nine ue in the coming years [14–18]. breast cancer patients treated with adjuvant (CMF) chemo- It should be noted, however, that although numerous therapy showed that 28% had deficits in the areas of studies have shown cognitive dysfunction in patients who concentration and memory versus 12% of the thirty-four have undergone chemotherapy, many of these studies did patients in the control group who did not receive adjuvant not assess the baseline cognitive function of patients before chemotherapy. Van Dam et al. [6] correlated the level of they underwent chemotherapy. In fact, a 2004 study that did cognitive impairment with the dosage of adjuvant chemo- assess baseline function found that 35% of women therapy. Their results showed that 32% of patients who had demonstrated cognitive impairment before the initiation of undergone high-dose chemotherapy were affected adversely chemotherapy for their breast cancer, underscoring the with respect to cognitive functioning while only 17% of the importance of establishing pre-chemotherapy baseline patients who were given a standard dose of chemotherapy cognitive functioning to accurately assess whether or not were adversely affected, demonstrating a dose response chemotherapy is indeed responsible for their cognitive rate. Brezden et al. [7] surveyed 3 groups of women: group decline [19]. Additionally, some studies researching chemo- A consisted of breast cancer patients undergoing adjuvant brain have concluded that there was no statistically chemotherapy, group B consisted of women who had significant difference in domains such as attention, cogni- finished chemotherapy treatment on average of 2 years tion, or language between breast cancer patients who ago, and group C consisted of healthy controls. Women in received chemotherapy and those who did not [20, 21]. both groups A and B suffered more cognitive dysfunction Another study looked into the relationship between self- than those in group C; furthermore, group A proved to have reported and objective cognitive dysfunction in breast greater cognitive deficits than group B. Ahles et al. [8] cancer patients treated with adjuvant therapy. It found that reviewed the cases of breast cancer or lymphoma survivors self-reported memory and concentration problems were who had been diagnosed and treated with chemotherapy in actually associated with psychological distress, rather than J Cancer Surviv (2009) 3:223–232 225 true cognitive decline as assessed by objective cognitive Methods testing [22]. Data from more recent studies suggest that chemobrain may be more complex in its etiology, caused The overarching investigation from which these data are not solely by chemotherapy treatment but potentially also drawn was designed as an exploratory pilot study that precipitated by the “impact of surgery and anesthesia, investigated post-treatment side effects of breast cancer hormonal therapy, menopause, anxiety, depression, fatigue, survivors, detailing the range of symptoms, how women supportive care medications, genetic predisposition, comor- manage these symptoms, and the effects these symptoms bid medical conditions, or possibly paraneoplastic phenom- have on women’s personal and professional lives. These enon” [23]. Cited as problematic in this body of research is data were obtained from 74 women through the use of the lack of standard measures of cognitive impairment and focus groups and in-depth interviews. small sample sizes. Certainly, overall, while there is no Adult subjects were at least 1 year beyond completion of definitive understanding of chemobrain, there is consensus adjuvant radiation and/or chemotherapy (some were con- that there is yet a need for large, multi-center studies to tinuing with Tamoxifen therapy). Recruitment occurred further explore this phenomenon. through the distribution and posting of flyers at various Although the controversy over chemobrain persists, cancer wellness centers, physicians’ offices, and support survivors continue to report post-chemotherapy cognitive group meeting sites. Flyers, approved by the UCLA changes, and a significant body of research validates the Institutional Review Board, included the following text existence of cognitive impairment experienced by breast (formatted and with graphics): cancer survivors subsequent to chemotherapy. A 2005 Are you a breast cancer survivor who has completed meta-analysis of chemobrain literature concluded that radiation or chemotherapy at least a year ago? Do you cognitive impairment was indeed a reality for many breast currently experience any sensations you believe may cancer survivors who underwent chemotherapy [24]. be related to your treatment, like fatigue, arthritis, Indeed, the health care community has already begun an memory loss, pain, or others? If you answered yes, examination of chemobrain’s effects on patients’ lives. A then we would like the opportunity to speak with you. 2005 article by Matsuda et al. [25] recognized that the We are a UCLA based research team studying the “principle negative effect” of this mild cognitive impair- range of post-treatment experiences of breast cancer ment was “deterioration of quality of life.” Citing a 2001 survivors. We are also interested in understanding how article by Bender et al. [26], Matsuda et al. noted that the people cope with post-treatment discomforts. most devastating effects are “for patients who hold professional and social positions.” Despite the observation Respondents to the flyers were pre-screened by phone. The final sample included 36 African Americans and 38 Whites. that cognitive impairment can have devastating effects on the personal and professional lives of women, there has Women were eligible to participate in focus groups and/or been little discussion about the psychosocial ramifications interviews; a total of 74 women were interviewed, and 20 of this condition. Both national and international media participated in both the focus groups and interviews. Since have become increasingly alerted to the quality of life respondents self-selected for the study based upon their problems that women with cognitive impairment experi- subjective assessment of their post-treatment conditions, this ence [27, 28], and commercial products have been is perforce a skewed sample. Given that we were conducting manufacturedtohelppatientswithchemobrain[29]. an exploratory investigation, however, we felt that the short- However, despite the media attention on the subject, only comings of this recruitment strategy were acceptable and a small number of medical journals have detailed the direct would allow us to access subjects most efficiently. effects of cognitive impairment on the lives of breast cancer At the beginning of our research, we conducted four focus groups (6–8 participants each) in order to collect patients [22, 30, 31]. There is, therefore, a paucity of literature focusing solely on the psychosocial effects of preliminary data and help refine our interview instrument. chemobrain, and our paper is one of the few in-depth Subsequently, we conducted one in-depth interview (ap- descriptions of the psychosocial ramifications of chemo- proximately 1–3 h in length) with each interview subject. brain in the words of cancer survivors. Such literature needs Included in the interview instrument were sections eliciting to be available not only for breast cancer survivors, who data about the patients’ medical background and treatment may seek reassurance and often voice a longing for experience, the nature of their post treatment symptoms, validation of their cognitive symptoms, but also for nurses reactions from medical personnel and from family and and physicians, who need to better understand the sorts of friends, the patients’ self-management of the symptoms and changes their patients may be undergoing during and after the reactions of their providers, the strength of their social chemotherapy so that they can be informed and compas- networks, and their evolving perceptions of self. To elicit sionate providers for their patients. data regarding symptoms, respondents were asked to self- 226 J Cancer Surviv (2009) 3:223–232 report whether they were experiencing any from an treatment; of these symptoms, cognitive impairment was extensive list; since the term “chemobrain” was then and one of the most frequently documented (70%). Other is still unfamiliar to some survivors, we queried about studies of breast cancer survivors report a wide range of cognitive impairment by asking separately whether they prevalence of this specific symptom, typically from 10– experienced loss of words, forgetfulness, memory loss, or 40%. A University of Rochester Medical Center study of chemobrain. Interviews and fieldnotes from the interview 595 cancer survivors across the US, however, reported a visit were tape recorded and transcribed. rate of 76% 6 months after completion of treatment [33]. Qualitative data were entered into computer files as the Effects of this condition were wide ranging and considered research progressed. Data in these forms consist of large most troublesome by respondents. The following sections verbal texts that must be interpreted, organized, and summa- delineate the experiences of survivors in our study who rized using some text based analysis technique. A number of were living with cognitive impairment. These experiences such techniques exist [32] which differ primarily in how the are discussed in terms of the general psychosocial influence original texts are coded for subsequent sorting and organi- of the symptoms, impact on interactions with medical zation. The technique most appropriate to our data and providers, ramifications on social networks, consequences research goals is ethnographic content analysis referred to by to work and economic well-being, and coping strategies Crabtree and Miller [32]as template text analysis. Essential- employed by these women. ly, this technique involves the creation of a code book based on variables identified by the researcher at the beginning of General descriptions of chemobrain/psychosocial impact the study as relevant to the research questions and goals. Texts are read and codes are assigned to relevant portions of A variety of cognitive changes experienced by respondents the text and entered. Code categories can be revised, in our study were defined as “frustrating” and “upsetting.” expanded, and created as the research progresses. This Some women described being frightened by their dimin- requires that coding proceed from the very beginning of ished ability to retain material or to digest new information the research and that previously coded materials are updated and recognized that they were not functioning as they once as the coding is refined. The codes were ultimately managed did. using HyperResearch software. & You have to fight to make yourself remember numbers, The process of coding allows for the thematic analysis of words, places that you go. Sometimes I would leave the data. Of some concern, however, is the validity of qualitative house to go somewhere and I really couldn’t remember data that have been processed by a single researcher. To how to get there… it almost made me break down address this, the use of multiple coders has become a more because of the fact that you think you’re losing your common practice in qualitative studies, as has the consensus mind. based review process which allows a group of coders to & …I can remember just sitting there and thinking, ‘My regularly review their identification of themes and codes. This brain is just absolutely dead. I don’t think I’ll ever be study employed the skills of four trained coders in addition to able to think again.’ And finding it very frightening… I input from the project director and the principal investigator. do remember almost being panicked that I would never The entire research team met on a bi-weekly basis during the be able to think of words again, [that] I wouldn’t coding process and divergent ratings were assessed and function. discussed. In having a number of coders identify both the & …it’s not like I’m suddenly acting retarded or a dull themes found within the texts as well as the representative normal. I’m still able to function. It’s just the fine quotes illuminating these themes and in subjecting the process degree of memory or the speed at which I’d be able to to scrutiny by our entire team in a group setting resulted in a recall information. carefully constructed and analyzed dataset. & I can’t read technical books anymore. I just don’t Though our sample is relatively small for any sort of understand them. I’ll read the same page over and over complex quantitative analysis, we did enter quantifiable and over again and it just doesn’t make sense. So I can’t data into an SPSS database and compiled descriptive self-teach the way I used to be able to…I [also] don’t univariate and multivariate statistics. Table 1 details various read philosophy books anymore. I don’t read books demographic and treatment data. about politics or historic analysis or critiques. My reading is a lot lighter. Other women faced diminished independence, becoming Results limited in their ability to manage certain responsibilities or get around. These types of changes led women to feel Women in our study reported, on average, 15 discrete, scared, dependent, and emotionally drained. chronic symptoms that they attributed to their cancer J Cancer Surviv (2009) 3:223–232 227 Table 1 Descriptive data of respondents (N=74) Table 1 (continued) Variable Valid % Variable Valid % Age Cancer treatments 30–39 2.8 Surgery 100.0 40–49 22.5 Radiation 76.3 50–59 42.5 Chemotherapy 77.6 60–69 21.1 Hormone therapy 72.4 70–79 8.5 80–89 2.8 Ethnicity & What I have to do sometimes is have my son come over White 51.4 and pay my bills. Can you imagine? It really makes me African American 48.6 feel bad…I’ve been so independent and here I am at Marital status 55 years old and I can’t pay my bills. And the money’s Married 38.6 there. Divorced 31.4 & I just felt like I was getting scared that I would hurt Separated 5.7 myself…I [couldn’t] remember if I looked at a Widowed 10.0 stoplight. I felt like it was putting myself at risk. Single 10.0 & I have been so lost [while driving], I just pull over, and Unmarried, living with partner 2.9 break down, and start crying. Because it’s places I’ve Other 1.4 been before and I know where I am going. It’s terrible. Number of children 0 20.6 Responses from the medical community 1 14.7 2 36.8 One significant complaint that a majority of the interviewed 3 17.7 women voiced was the lack of acknowledgement by the 4 4.4 medical community when they complained about various 5 5.9 symptoms of chemobrain. One respondent raised the issue of Education level doctors’ attitudes toward cognitive impairment with the Less than HS 0.0 women in her support group, and they concurred that doctors HS 11.4 “poo-pooed” the condition and said, “‘oh no there is no such Some college 37.1 thing.’” Another respondent became increasingly frustrated College graduate 25.7 when no one on her medical team could seem to agree about Postgraduate study 22.9 what was happening to her: “it seems like most of [the Other 2.9 doctors] are very insensitive, not all of them, but a lot of them Total family income just seem to not be able to hear what you are asking. Like I Less than $10,000 9.0 talked with maybe 6 radiation oncologists, and not one of $10,000–14,999 6.0 them was agreeable to telling me what was going on.” Other $15,000–19,999 9.0 women reported that their doctors blamed their memory $20,000–24,999 4.5 problems and other cognitive dysfunction on age; one $25,000–29,999 4.5 participant said, “I talked to my doctor[s] about [the memory $30,000–34,999 3.0 loss and loss of words] and what I would get was, ‘You’re $35,000–39,999 10.5 getting older.’ I mean, they sit there and give the odd nod to $40,000–49,999 13.4 the fact that there was cognitive impairment but that I should $50,000–59,999 3.0 be fine.” $60,000–74,999 16.4 Many women wished they had received some warning. More than $74,999 20.9 As one woman put it: “I really think it’s the responsibility Employment status of the physicians to acknowledge or to inform people that Unemployed 45.7 you might have a short term memory.” Another stated, “… Full-time 41.4 you know, I wish that whether it’s a doctor or a patient care Part-time 12.9 coordinator or somebody, would sit down with a patient and talk to them [and say] ‘You know, you may not get it, 228 J Cancer Surviv (2009) 3:223–232 but these are some of the things that happen… just be Though this is the type of validation many women are aware, so that you don’t get frightened that you are losing it seeking from their physicians for their symptoms, few in or aren’t meeting everybody’s expectations.’” our study received it. This left many of them frustrated, It is important to note that a smaller number of women scared, and unsure about what was happening to their did receive validation from their physicians when they minds. brought up the various symptoms associated with chemo- brain. How quickly doctors acknowledged patients’ symp- Reactions of family and friends toms, however, varied. For example, Lucy, a high school graduate with two grown children, waited a long time: The reactions of family and friends after the onset of symptoms vary from apathetic to supportive. Janet, a My oncologist…finally admitted that chemo does married mother of two, said her family did not take her affect your brain…he finally said it…all this time… complaints about her cognitive changes seriously, making he, you know, denied it… [I felt] vindicated because I her feel helpless: knew my body. I knew that I was much more forgetful than I ever was, and I don’t think that it I wish I could really talk to somebody who could would have been this enhanced just by age and…what really validate what I’m saying because my family, I had been sharing, and not so much complaining they kind of laugh. I feel that sometimes I desperately about, but expressing concerns about, was finally struggle to remember things. I don’t know who to talk acknowledged by my oncologist. to. I’ve told everybody, but nobody [is offering any kind of help]. Another participant reported that her doctor simply Another woman, Tammy, a divorced mother of two, stated that the cognitive dysfunction she was experiencing was a condition termed chemobrain, but offered no advice. reported that her teenage son, as well as others around her, She stated, “I talked about [my symptoms] with my began to challenge her authority: oncologist and she said, “that’s chemobrain”… [but] she Trust me, your children will take advantage of you really [hadn’t] suggested doing anything about it.” Jackie, a because they’ll say, ‘but that’s not what you said married mother of two, worked part-time. She fretted: yesterday mom’…and I’m like, ‘yeah, I think I said [My oncologist] noticed that I wrote on my hand, my that.’ And I had to stop saying ‘I think I said that’… notes, and he said, ‘what are you doing that for?’ And I that was giving people [a window.] Everybody was go, ‘you guys did this to me. I don’thave my memory coming back and telling me, “well, you didn’t say anymore.’ He goes, ‘well, do you think you have that.’ Yes, I did. That sounds like something I would chemobrain?’ I said, ‘yeah…does it go away? Does it have said… get better? Does it get worse? What’s the deal?’ And he Several women acknowledged that chemobrain confused says, ‘we really don’tknow.’ And I think that’s the case. their families and friends, especially young children. For I think they really don’t know. That’s why nobody’s example, one mother reported that her loss of words was a sending you anywhere [for treatment.]. source of confusion for her children, who would often say, One woman reported a positive experience with her “mamma, what’s wrong with you?” Even many adults nurse and physician: could not understand the extent of the cognitive changes. Sharon stated: …I started to describe to her my sort of mental, I don’t know what to call it, cognitive issues maybe… If I’m out and I’ll say something to someone, ‘oh And I started to mention this… [to] the nurse and she gosh, I’m sorry my memory’s not really great.’ just interrupted me and said, ‘oh chemobrain… People…say the silliest things in response. They don’t think that you’re really meaning it. They’ll everybody gets that.’ And I said, ‘well, what are you talking about?’ And then once she started talking think, ‘oh, mine too, oh whatever.’ But you're just to me about that, then I felt oh ok, this is something like, ‘no really, I really...it’s just not even funny.’ And that other people share and this can get better. I didn’t that’s hard. I think that’s really hard. feel like I was going crazy or a sense of isolation Sharon also reported that her friends seemed afraid when about it or anything and then the doctor came in and her symptoms seemed especially severe: we talked about it again. And we talk about it now when I go in. So I don’t feel a sense of hostility from The brain is bad, the brain is embarrassingly bad. the medical profession or anything like that about it. I People that know me, I’m fine with. They all understand because they just have kind of gotten just feel that it’s an under researched area…. J Cancer Surviv (2009) 3:223–232 229 used to it. Though I think some of them are kind of think about it…I have to call downtown to make sure I afraid because sometimes it is really bad. Certain days [am] doing the right thing…There’s…hesitance…So I have are better than others…But it’s embarrassing… to call [downtown] a lot; I call them almost everyday…I wasn’t like this before.” Another participant, a secretary, noticed: “I get frustrated easier. You know, I feel more Money and work stressed, like I’m at the counter and I’m working, you know, doing the filing, then all of a sudden, sometimes I Chemobrain can affect job performance. Because the ability draw a blank, like, what do I do next?” Charlotte, a single to focus diminishes, duties become more difficult and often mother whose income supports two children, was forced to take longer to perform. Carrie, a school teacher, was a quit her job and find one with a lighter workload. As a married mother of two teenagers at the time of her result, her salary fell dramatically. diagnosis. After her first chemotherapy treatment as well as a mastectomy, she and her husband divorced. After her When I was diagnosed, I was the project manager for treatment, Carrie felt she was easily distracted at work: a $24 million government project retrofitting military aircraft. I had thousands of engineering drawings and I find myself getting day dreamy. I am like the ADD concepts in my head. I had names and phones kid: [I] can hyper-focus as long as [I am] doing one numbers [and] figures. I had a mind like a steel trap. thing, but if something walks by down the hall, [and] For the first three or four years after treatment I was I see it…I am gone. It makes my job a lot harder totally useless. I couldn’t even remember people’s because as a teacher you have to do everything all at phone numbers… I’m still probably more efficient once. So when I leave at the end of the day, I am than the average fool, but I know that I’m different, spent, when before I was energetic. And it’s not a which is one of the reasons that I’m working...a much physical spent; it is a mental spent that I didn’t used to less demanding job. I don’t need to have the kind of have. technical expertise that I did in [my previous] Respondents reported decreased efficiency and speed at position. So, I have the earning potential that’s about work, thus reducing their chances of being promoted or $25–$30,000 less. And as a single mother of two assigned to projects, as they and their employers realize that children that becomes a real issue… And I have my they are no longer able to handle the level of work they sister who is a physician and friends who have MBAs were accustomed to pre-cancer treatment. Mary, a Pacific from UCLA like I do who say, ‘…You could do Bell employee, thought that “I got passed over for anything. You don’t have to have a job at this salary. opportunities and [didn’t get] the chances I would have You’re earning nothing.’ And I’m thinking, ‘you normally gotten for advancement.” She believed that this know what? I’m really grateful to be earning anything was due to her memory loss, which she said was starting to at this point.’ affect the quality and speed of her work. Another woman, Harriet, a married mother of three, was the manager of a Jill, a divorced mother of one, reported having to lie to her large office. She took early retirement as a result of her previous boss: cognitive impairment: The memory loss… has sometimes been fairly I went into retirement because of the cancer, simply significant. Certainly in my last job, my boss would because I could not maintain the level of work that I say, ‘remember that document we did last week?’…I was used to…They came to me for everything. I had a would say, ‘I think I remember. Give me a few more big responsibility and I enjoyed it…after the cancer clues. Well, let me look.’ And sort of try and fake it and going back to work, I couldn’t sustain that. Every and hope that I would come up with the right thing. 2 hours, I was going somewhere to sit down and relax and could not think well…I couldn’t coordinate Memory problems also often increased stress, especially everything that was going on. I couldn’tdoit in a professional environment. Laura, a post-doctoral anymore…With this memory thing I was very frus- research fellow, felt nervous conversing with colleagues trated at work and so I thought that I can’tgoonlike after her symptoms started to become severe: “…it was a this. It was a chore now going to work than a joy. I just very sharp decline when the treatment started…I’m very assessed the situation and said that it’s not worth it. insecure when I’m talking to people professionally because I’m worried I’m just going to draw a blank.” Karen, a typist Chemobrain also affected women who were job hunting. and clerk, became more hesitant about completing the work Some reported more severe symptoms in stressful situations she was assigned and often called headquarters for like interviews. Others realized that such symptoms as clarification: “When I’m working at a situation I have to memory loss prevented their ability to find employment. 230 J Cancer Surviv (2009) 3:223–232 Laura, for example, stated: “I’ve been job hunting the last Other women tried to counteract the effects of chemo- 3 years and it’s extremely stressful to go to interviews therapy by keeping their minds active. One respondent knowing that I have these memory issues…I’m just not as started doing problems out of the workbooks that she sharp as I was…I used to be able to think on my feet really bought for her niece: “…I do a lot of the math and the well, and that’s gone, that edge is just totally gone now.” cognitive problems…And I find if I keep my mind moving Women attempting to complete degrees in order to (re)enter and learning that it’s getting better.” Katherine considered a the job market were also disadvantaged by chemobrain more drastic step: “I have a long-term project… going back symptoms. Emily noted: to school… And I think the more I push myself, the more I will gain back. I mean, I have heard that the people do get I started going to school about the same time as I brain function back and there [is] a lot of research that, in started my cancer treatment…I’m studying French… fact, brain cells do [regenerate]….” It feels so different to me from how I was before… For some, coping means having to significantly curtail It’s as if I can’t grasp what the teacher is saying. I work and social activities. Charlotte, who took a lower paying listen very carefully. I concentrate, but I feel like it job to reduce stress, decided to avoid certain social occasions. doesn’t get into my brain. It feels like something isn’t “Idon’t put myself in situations where I have to worry about quite working in my brain the way it used to…it’s my memory or ability. I don’t think I’d go to a fancy party at harder for me to process new verbal material. It seems the Music Center with my friend who is a composer even to be a verbal intake problem on that level…and I though she has invited me because I don’t think I’dbeable to watch the other students and I see that it’s different for handle the conversation. I think I’m quieter than I used to be.” me than it is for them. Other women, however, have more or less accepted the Laura suffered a major setback when writing her disserta- limitations that the cognitive impairment puts on their lives tion because cognitive impairment affected her ability to read. and resigned themselves to a diminished cognitive capacity. After having worked as an attorney for 15 years, managing a Laura has come to terms with her memory loss: “Idon’teven law firm in a major Midwestern city, she quit her job and bother to listen to people’s names anymore because I know I enrolled in a PhD program, during which she was diagnosed won’t remember them. So I don’teven try…” Maryanne, a with breast cancer. She described herself as once being college graduate and mother of one, simply told people that ambitious and competitive, yet after her first year of treatment, she had memory problems, so if they want her to remember she no longer had that same drive. She stated, “…When I something, it is their responsibility to remind her: began the chemo…Icouldn’t concentrate at all and I couldn’t I’ve just made [my memory] into a game. I don’t worry read for about the first year. I think I read one novel during that about it if I don’tremember…I tell people up front that I entire time. I read no academic material. I couldn’twork. I don’t remember well, so if it’s something important to couldn’t write. The following year I needed to finish my Ph.D. [them], [I tell them to] call me several times. With my and it was…extremely hard, and I felt I couldn’t concentrate daughter, I’ve told her that she is very important to me, adequately.” but I don’t remember well. If it’s important, you have to send it to me in a letter so I can put it on the refrigerator Coping or tell it to me time and time again. I tell her that if I don’t remember it, I’m not going to let [her] beat me up Women devised various ways to deal with the symptoms of because I didn’tremember it…so even though my chemobrain. Some kept journals to record everything they memory is very bad, I don’t let it get me down and I just needed to do. One participant used calendars: “…Ihave to turn it around and make it comical and do other things write down an awful lot to make myself remember. My with it... even though I know it’smajor. calendar is filled up with what I should and shouldn’tdo each day, so I can keep up with things.” Another woman reported: Another woman stated, “At the support group, we joke “I have Post-its all over my refrigerator, all over my mirror and about it and call it chemobrain. We write each other notes everywhere.” In fact, the most common method used by so we don’t forget to say things and it’s just the way it is.” women is Post-its, with some covering walls in their homes As another woman put it, “I hold on to the moment because with reminders for typically mundane tasks such as “turn off I don’t have the ability to hold on to memories.” the gas” or “remember to close front door.” Still others trained themselves to put objects, such as keys, in specific places. One participant stated: “…when I get out of the car, I tell myself to Discussion secure the keys, make sure you put the keys in the right place. When I get home, I immediately put the keys in a specific The qualitative data discussed in this paper underscore the place. I misplace everything.” very serious ways in which chemobrain can affect the life J Cancer Surviv (2009) 3:223–232 231 experiences of cancer survivors. Chemobrain is only one of assessment of these women are not sensitive enough to the many post-treatment symptoms that survivors of cancer detect the changes in functioning that they experience. The experience. Thus, although medical science has developed stories we gathered in our interviews show the various adequately aggressive cancer treatments that result in changes in memory, concentration, and thinking ability that greatly diminished mortality from the disease, the cures they have experienced since chemotherapy. The fact that may be adversely affecting the lives of survivors. Research certain assessments cannot appreciate these changes does continues to unfold in this arena, especially as researchers mean not they do not exist; this is why in-depth interviews of try to discover the specific mechanisms behind chemobrain survivors are important. Such reports are necessary to show and other post-treatment symptoms, and the mass media the true cognitive impact of chemotherapy and to help guide have begun to widely acknowledge the phenomenon, the development of measures that can detect the cognitive increasing society’s awareness of the condition. This changes these women describe. Downie et al. [31] state that progress in both the scientific community and in society many measures of cognitive assessment, such as the High at large is crucial to the understanding of chemobrain and Sensitivity Cognitive Screen, are not relevant to daily its psychosocial effects. functioning and describe a 1999 study by Sbordone and A clear understanding of the cognitive impairments Guilmette which showed that few neuropsychological tests experienced by survivors through detailed interviews and “had been designed to simulate real life situations and that no documentation will aid researchers in developing targeted assessment adequately predicted everyday function.” Thus, therapies and interventions aimed at improving or mitigat- interview data, such as ours, are critical in highlighting ing these post-treatment side effects. It is difficult to truly exactly why we need to develop neurocognitive batteries that understand the life changes these women have undergone can better detect subtle changes in cognitive functioning. without hearing first-hand accounts of their experiences. This study, however, does suffer from several limitations. A Data obtained from questionnaires cannot fully convey the larger sample size drawn from a random, national pool of experience of cognitive limitation and its relationship to survivors would help to clarify the experiences of the broader daily functioning as perceived by the survivor herself the population of survivors; this study, as a pilot, relied upon a way an in-depth interview can. Without these more detailed non-random sample that self-nominated for the study and that accounts, it is difficult for the nurses, physicians, and self-reported cognitive impairment. The inclusion of more researchers working with these patients to obtain a full empirical measures of cognitive function administered both understanding of the clinical picture necessary to develop pre- and post-treatment, albeit potentially limited in their ability effective interventional strategies. It is also essential to to fully assess the scope of cognitive decline, would have added educate family members, as well as survivors themselves, an additional layer of useful data in our quest to understand the extent and impacts of chemobrain. Future studies should also that the cognitive changes being seen are not unexpected or uncommon in a chemotherapy population, thus helping purposively include women of other ethnicities beyond the survivors and their families cope by reading the accounts of African American and Caucasian women included here. others experiencing a similar reality. Our study also points As more and more people survive cancer long term, and out that the need for spreading awareness and developing our understanding of these phenomena improve, the amelio- effective interventions and therapies is not purely for the ration of post-treatment quality of life for survivors will pose a emotional and psychological well being of survivors, but significant challenge. Central to informing this effort will be for economic purposes as well. The impact of cognitive greater knowledge through expanded research in this field and changes on the financial stability of patients and their a heightened focus on the interplay between chronic con- families can be quite significant as seen in the accounts of ditions such as chemobrain and resultant life experience. our study participants. Many women are unable to function at the same level professionally, to complete their educa- tions, or to keep their jobs, thereby profoundly affecting their financial security, particularly if they are the sole Open Access This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which per- providers in their households. mits any noncommercial use, distribution, and reproduction in any Despite the large number of women who report medium, provided the original author(s) and source are credited. cognitive impairment and functional decline, several papers have published data suggesting that there is a discrepancy between the cognitive decline women perceive and what References objective cognitive assessments show [21, 31]. This does not mean that breast cancer survivors are overestimating 1. National Cancer Institute. Estimated US cancer prevalence. their degree of cognitive impairment, but rather, may mean Updated May 13, 2009. 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Journal

Journal of Cancer SurvivorshipPubmed Central

Published: Sep 16, 2009

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