By drawing on Jean-Luc Nancy’s philosophy of ontological relationality, this article explores what it means to be a ‘we’ in breast cancer. What are the characteristics—the extent and diversity—of couples’ relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. While ‘being different together’, partners have different, albeit connected kinds of experiences of breast cancer. While ‘being there for you’, (...) partners take care of each other in mutually dependent ways. While ‘being reconnected to you’, partners relate to each other through intimacy and sexuality. While ‘being like you’, partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a ‘we’ involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a ‘we’ may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer. (shrink)

In philosophy of religion, there are few more frequently visited topics than the problem of evil, which has attracted considerable interest since the time of Epicurus. It is well known that the problem of evil involves responding to the apparent tension between 1) belief in the existence of a good, all powerful, all knowing God and 2) the existence of evil—such as personal suffering embodied in the experience of cancer. While a great deal has been written concerning abstract (...) philosophical theories that academics use to explain the existence of evil, much less has been written about how religious lay people make sense of evil and suffering. What explanations, meanings, and perceptions do they hold concerning the religious significance of evil? What can theologians and philosophers learn from these lay experiences? Our interdisciplinary team designed an experiment to identify the religious significance that personal suffering held for a group of religious cancer sufferers. We interviewed twenty-nine self-identified evangelical Christians who had received a cancer diagnosis at some point in their lives for our experiment. Since all interviewees identified as Christians, it was expected that they would assent to belief in a theistic God. It was also expected that each interviewee would assent the existence of evil and see their cancer experience as a dramatic and personal instance of an evil event. The explicit existential threat of cancer guarantees that the individual has much at stake in the experience. Furthermore, the pain and suffering that typically accompanies either the cancer itself or cancer treatments make it a compelling example of evil experienced in a very personal way. Finally, even when successfully treated, the ongoing threat of potentially fatal recurrence looms over the sufferer for years to come. We asked 17 questions related to the religious significance of their cancer experience in each interview and coded these interviews looking for five distinct types of explanations for/meaning of evil: trusting God in mystery, free will, moral development, spiritual growth, and growth in human relationships/community. These categories were meant to correspond loosely to five philosophical responses to the existence of evil.Our interviews included several important results. First, 79% of interviewees had at least one answer that fit into the ‘trust God in mystery’ category of responses with 48% using this category of responses as their most frequently cited theme. This result could be interpreted as a kind of generic theodical response: God has a good, but unknown reason for allowing evil/suffering. Alternatively, another possible interpretation is that at least some of these interviewees intuited something similar to skeptical theism, since it claims that if one understands the type of God proposed by theism and possesses an accurate view of human cognitive capacities, it is apparent that there is no real tension to be resolved between theism and the existence of evil. Some of our interviewees seemed to believe not only that the answer to why evil exists is mysterious, but that they simply could not have the necessary perspective to judge what kinds of purposes God might have for allowing this painful episode in their lives.While it was unsurprising that religious sufferers would find it important to trust God in ambiguous difficult circumstances, more surprisingly, we found that 52% of our respondents did not judge that their cancer experience was at all in tension with their religious beliefs. Whereas a broad range of philosophers and theologians acknowledge that there is at least an apparent conflict between the existence of a good, all-powerful God and the existence of evil, most of our interviewees did not even perceive an apparent tension between theistic beliefs and their painful cancer experiences that would be in need of additional reconciliation.There are at least two ways this result might be interpreted. First, our interviewees might hold additional beliefs that make the existence of evil easier for them to accept. After all, these interviewees were not ‘bare theists’ who held only to the existence of God, but presumably held a broad range of religious beliefs which may already serve to reconcile the existence of evil: that growing closer to God is more important than earthly life itself, that in evil in this life allows us a greater appreciation of a blessed eternity, or simply that ‘God works for our good in mysterious ways.’ Thus, a fully developed Christian worldview may already accommodate the existence of evil in a way not fully appreciated by philosophers.Another possible interpretation is that at least some of our interviewees were not adequately reflective to perceive the tension between their religious beliefs and their experience of suffering. There is at least some reason to doubt this explanation as an overarching interpretation of this result since our interviewees were generally well educated with the median participant holding at least a Bachelor’s degree, and most were ongoing participants in a cancer support group ensuring long-term ongoing engagement with their cancer experience.A final significant finding is that a high portion of our interviewees, 83% reported specific examples of beneficial personal growth—moral, spiritual, or relational— that resulted from their cancer experience. When asked about their cancer experience’s broad effect upon their lives in these areas they volunteered at least one example of a benefit they received in these areas. Depending on one’s accompanying value theory and whether such benefits might have been otherwise achieved, they might provide a morally sufficient reason for the existence of suffering. Our interviewees frequently described experiencing the kind of benefits at the heart of John Hick’s soul making theodicy and Eleonore Stump’s ‘spiritual growth’ theodicy, providing at least some corroborating evidence for such views. Experiences common to our interviewees were similar to what such theodicies would predict. (shrink)

The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in (...) care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: active participants, patients giving active consent, and patients giving passive consent to medical decisions. (shrink)

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups. Recounting an experience to illustrate a philosophical question chosen by the participants is the traditional point of departure for the dialogical exchange. However, narrating is much more than a beginning point or the skeletal framework of events and it deserves more scholarly attention than hitherto given. Storytelling pervades the whole Socratic process and impacts the conceptual analysis in a SDG. In this (...) article we show how the narrative aspect became a rich resource for the compassionate bond between participants and how their stories cultivated the abstract reflection in the group. In addition, the aim of the article is to reveal the different layers in the performance of storytelling, or of authoring experience. By picking, poking and dissecting an experience through a collaborative effort, most participants had their initial experience existentially refined and the chosen concept of which the experience served as an illustration transformed into a moral compass to be used in self-orientation post cancer. (shrink)

This study explored how women with a diagnosis of cancer (lymphoma) deal with moral concerns related to their responsibility as parents. Ten women with cancer and who had children living at home were interviewed. The interviews were analysed according to the constant comparative method used in grounded theory. In order to provide a focus for the analysis, the ethics of care and the concept of mothering were used as sensitizing concepts. The core concept ‘experience of dealing with (...) moral responsibility of being a parent with cancer by redefining oneself as a mother’ was identified. The processes involved were: interrupted mothering; facing the life-threatening illness and children’s reactions; striving to be a good mother; attempting to deal with moral responsibility; and coming to terms with being a mother. (shrink)

There is limited knowledge about cancer patients' experiences of uncertainty while waiting for genome sequencing results, and whether prolonged uncertainty contributes to psychological factors in this context. To investigate uncertainty in patients with a cancer of likely hereditary origin while waiting for genome sequencing results, we collected questionnaire and interview data at baseline, and at three and 12 months follow up. Participants had negative attitudes towards uncertainty at baseline, and low levels of uncertainty at three and 12 months. (...) Uncertainty about genome sequencing did not change significantly over time [t = 0.660, p = 0.510]. Greater perceived susceptibility for cancer [r = 0.14, p < 0.01], fear of cancer recurrence [r = 0.19, p < 0.01], perceived importance of genome sequencing [r = 0.24, p < 0.01], intention to change behavior if a gene variant indicating risk is found [r = 0.29, p < 0.01], perceived ability to cope with results [r = 0.36, p < 0.01], and satisfaction with decision to have genome sequencing [r = 0.52, p < 0.01] were significantly correlated with negative attitudes towards uncertainty at baseline. Multiple primary cancer diagnoses [B = −2.364 [−4.238, −0.491], p = 0.014], lower perceived ability to cope with results [B = −0.1.881 [−3.403, −0.359], p = 0.016] at baseline, greater anxiety about genome sequencing [B = 0.347 [0.148, 0.546], p = 0.0012] at 3 months, and greater perceived uncertainty about genome sequencing [B = 0.494 [0.267, 0.721] p = 0.000] at 3 months significantly predicted greater perceived uncertainty about genome sequencing at 12 months. Greater perceived uncertainty about genome sequencing at 3 months significantly predicted greater anxiety about genome sequencing at 12 months [B = 0.291 [0.072, 0.509], p = 0.009]. Semi-structured interviews revealed that while participants were motivated to pursue genome sequencing as a strategy to reduce their illness and risk uncertainty, genome sequencing generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently discussed over the 12 months, while others emerged over time. Similarly, some uncertainty coping strategies were consistent over time, while others emerged while patients waited for their genome sequencing results. This study demonstrates the complexity of uncertainty generated by genome sequencing for cancer patients and provides further support for the inter-relationship between uncertainty and anxiety. Helping patients manage their uncertainty may ameliorate psychological morbidity. (shrink)

BackgroundCancer diagnosis and treatment represent a real upheaval both for the patient and for his or her life partner. Adjustment to cancer has been widely studied at the individual level, however, there is little in the literature about the experiences of the couple as an entity. This is especially true with regard to a population facing advanced cancer. This systematic review aimed to make an inventory of 1) the current knowledge relating to the experience of the patient-partner (...) dyad when confronted with advanced cancer, and 2) the psychosocial interventions specifically centered on this dyad.MethodThis review was conducted using the Cochrane methodology. The eligibility criteria for the literature review were: one of the members of the dyad being treated for advanced cancer, dyad composed of the patient and his/her life partner. Databases from PubMed, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection and Scopus were investigated. A thematic content analysis on the basis of admitted articles made it possible to respond to each of our research objectives.ResultsThree hundred eighty-nine citations were found. Twenty were admitted to the systematic review of the literature. It highlighted the following experiences of the advanced cancer patient-life partner dyad: uncertainty about the future, disjointed time, intrusion into the couple's intimacy, attachment style and caregiving within the couple, couple's adjustment to cancer symptomatology, the couple's supportive care needs, role changes, nature of communication within the couple, anticipation of the coming death, and the meanings and beliefs around death. This review also describes the range of couple therapies used in the context of advanced cancer: emotionally focused-couple therapy, existential therapy, art therapy, support therapy and couple communication and intimacy promotion. These therapies seem to have individual beneficial effects for both the patient and his or her life partner as well as improving marital functioning.ConclusionsThese results clearly highlight that consideration of the couple and communication within the couple during care are fundamental to dyadic adjustment to advanced cancer. Further studies are needed to better understand the couple's experience in order to adapt the management of the couple facing advanced cancer. (shrink)

Childhood cancers are life-threatening diseases that affect not only the child but the whole family. Although rates of survival are high with modern therapy, childhood cancers are still serious and...

Despite some recognition that Aboriginal women who have experienced breast cancer may have unique health needs, little research has documented the experiences of Aboriginal women from their perspective. Our main objective was to explore and to begin to make visible Aboriginal women's experiences with breast cancer using the qualitative research technique, photovoice. The research was based in Saskatchewan, Canada and participants were Aboriginal women who had completed breast cancer treatment. Although Aboriginal women cannot be viewed as a (...) homogeneous group, participants indicated two areas of priority for health‐care: (i) Aboriginal identity and traditional beliefs, although expressed in diverse ways, are an important dimension of breast cancer experiences and have relevance for health‐care; and (ii) there is a need for multidimensional support which addresses larger issues of racism, power and socioeconomic inequality. We draw upon a critical and feminist conception of visuality to interrogate and disrupt the dominant visual terrain (both real and metaphorical) where Aboriginal women are either invisible or visible in disempowering ways. Aboriginal women who have experienced breast cancer must be made visible within health‐care in a way that recognizes their experiences situated within the structural context of marginalization through colonial oppression. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment (...) and of the presence or absence of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

Our study seeks a better understanding of how Spanish-speaking cancer patients communicate about their personal experiences with cancer. We examine the use of metaphor in narratives contributed to an online forum for Spanish speakers afflicted with various types of cancer. Specifically, we identify, quantify and discuss three categories of metaphors: violence, journey and other. Our study expands prior work on cancer communication by examining a language other than English, by focusing on how cancer victims communicate (...) among themselves, and by examining how cancer narratives discuss concerns about personal experiences with this disease. Research thus far has focused on English. The work also expands on what is known about how people use the metaphor ‘in the wild’. (shrink)

BackgroundThe research objective was to investigate social and cultural factors affecting breast cancer survivors’ experiences in Lebanese.MethodsA snowball sampling of 20 breast cancer survivors participated in the study. Semi-structured open-ended interviews were used to collect data.ResultsThe results showed that family support and religious beliefs were the primary supporting sources for breast cancer survivors. On the other hand, their body image and children were the major concerns. Thus, family and religious beliefs were needed to overcome breast cancer’s (...) daily burden.ConclusionWomen with breast cancer perceived their cancer experience through their social roles, reflecting a concern for image and role preservation. (shrink)

Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An (...) explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. (shrink)

This article exemplifies research on the subjective life experiences of women with breast cancer, designed from a psychoanalytic perspective. Such research aims to reveal the subjective intrapsychic processes of women suffering from breast cancer, which can provide researchers and health care professionals with useful insight. Using Biographic narrative interpretative method, the study reveals some common denominators in the subjective life experiences of women with breast cancer. The study revealed that the subjects consider the diagnosis of breast (...) class='Hi'>cancer as one of the four main events in their lives. Even though these events are very different from each other, in terms of type and severity, the results indicate a common process in the way these life events are experienced by the participants. These results are relevant for health care practitioners in structuring their psychosocial support programs so as to better accommodate their patients' psychological needs. (shrink)

Cancer diagnosed during pregnancy is a rare event. The most common type of malignancy diagnosed in pregnant women is breast cancer, whose incidence is expected to raise in the next future due to delayed childbirth, as well as to the increased occurrence of the disease at young age. Pregnant women diagnosed with breast cancer are exposed to multiple sources of stress, which may lead to poorer obstetric outcomes, such as preterm birth and low birth weight. In addition, (...) pregnancy involves physiological changes in the breasts that may blur the signs of cancer, with delayed diagnosis and poor prognosis. However, the lived experience of these women was investigated in very few studies. Given this scenario, we conducted this qualitative study to describe and understand women’s subjective experience of being diagnosed with breast cancer during pregnancy. The study was conducted following the principles of Interpretative Phenomenological Analysis. Participants were five women with breast cancer diagnosed during pregnancy, purposefully recruited at a public hospital during medical visits and interviewed at treatment initiation. The interview transcripts were analyzed using thematic analysis. The textual analysis led to the identification of three main themes related to: the emotional storm experienced after cancer diagnosis, and the importance of receiving appropriate information and being focused on treatment decisions; physical changes and comparisons with healthy women, associated with feelings of sadness and inadequacy; being positive, feeling free to disclose all kinds of emotions, religion and spirituality as sources of strength. The paradoxical coexistence of pregnancy and cancer represents a stressful experience for women and their loved ones. Adopting a systemic perspective may be important to understand the effects of such a complex condition, also considering its impact on healthcare workers. (shrink)

Cancer survivors are at risk for poor subjective well-being, but the potential beneficial effect of daily spiritual experiences is unknown. Using data from the second and third wave of the Midlife in the United States study, we examined the extent to which daily spiritual experiences at baseline moderate the association between subjective well-being at baseline and approximately 10 years later in cancer survivors. Regression analyses, controlled for age, educational attainment, and religious/spiritual coping, showed that daily spiritual experiences moderated (...) the association between life satisfaction at baseline and follow-up. Specifically, high spiritual experiences enhanced life satisfaction over time in cancer survivors with low life satisfaction at baseline. Also, daily spiritual experiences moderated the association between positive affect at baseline and follow-up, though this moderating effect was different for women and men. No moderating effect emerged for negative affect. (shrink)

Cancer patienthood and survivorship are often narrated as stories about hair and wigs. The following article examines cultural representations of cancer in mainstream memoirs, films, and on TV across Western European and American contexts. These representations are both the ideological substrate and a subtly subversive staging of a newly globalized cancer culture that expresses itself as an embodied discourse of individual experience. Wigs have become staples of an alternative story of especially women’s cancer experience, (...) one that contrasts with the advertising slogans of what has been termed ‘Cancer Inc.’ But wigs are also a prop for consumerist self-(re)invention and can be appropriated stereotypically, with regard to stock gendered expectations – despite and alongside their subversive potential. (shrink)

Rationale Treatment guidelines recommend a more conservative surgical approach than mastectomy for early stage breast cancer and a stronger emphasis on adjuvant therapy. Registry data at South Australian teaching hospitals have been used to monitor survivals and treatment in relation to these guidelines.Aims and objectives To use registry data to: (1) investigate trends in survival and treatment; and (2) compare treatment with guidelines.Methods Registry data from three teaching hospitals were used to analyse trends in primary courses of treatment of (...) breast cancers during 1977–2003 (n = 4671), using univariate analyses and multiple logistic regression. Disease-specific survivals were analysed using Kaplan–Meier product limit estimates and multivariable Cox proportional hazards regression.Results The 5-year survival was 79.9%, but with a secular increase, reaching 83.6% in 1997–2003. The relative risk of death (95% confidence limits) was 0.74 (0.62, 0.88) for 1997–2003, compared with previous diagnoses, after adjusting for tumour node metastasis stage, grade, age and place of residence. Treatment changes included an increase in conservative surgery (as opposed to mastectomy) from 51.7% in 1977–1990 to 76.8% in 1997–2003 for stage I (P < 0.001) and from 31.1% to 52.2% across these periods for stage II (P < 0.001). Adjuvant radiotherapy also became more common (P < 0.001), with 20.6% of patients receiving this treatment in 1977–1990 compared with 60.7% in 1997–2003. Radiotherapy generally was more prevalent when conservative surgery was provided, although also relatively common in mastectomy patients when tumour diameters exceeded 50 mm or when there were four or more involved nodes. The proportion of patients receiving chemotherapy increased (P < 0.001), from 19.6% in 1977–1990 to 36.9% in 1997–2003, and the proportion having hormone therapy also increased (P < 0.001), from 34.3% to 59.4% between these periods.Conclusions Survivals appear to be increasing and treatment trends are broadly consistent with guideline directions, and the earlier research on which these recommendations were based. (shrink)

This study explored 12 cancer patients’ experiences from participating in an online and on-site Shared Reading group for 16 weeks in Norway. Shared Reading is a practice in which prose and poetry are read aloud in small parts and discussed along the way. The study is a qualitative evaluation study with a particular focus on how the participants experienced the reading group supported their life living with cancer. The study was mainly based on the data collected from focus (...) group discussions with the participants, which was analysed qualitatively through open coding. In total, four themes were identified: open space, disconnecting through connecting, community, and resonances and echoes. The participants expressed that the RG helped them to “balance life and cancer”, and “disconnect” from their illness. The cognitive effort needed was beneficial for the participants as a form for “cognitive training.” Since many of the participants had, due to their illness, completely stopped reading books, the reading group also brought literature back into the participants’ lives. Furthermore, it was essential for the participants to feel they contributed to a community, to feel useful and valuable for others. The texts were also important, as some of them resonated strongly with the participants in the way of activating memories and connecting a text to own experiences. After a session, a text could still have an impact as an echo. The results are synthesised, discussed, and supported through the framework of self-determination theory and, more specifically, the basic psychological need theory. The reading group was experienced as a support for autonomy, competence, and relatedness and promoted a feeling of intrinsic motivation that brought about new dimensions in the participants’ lives. The study wishes to increase our knowledge of the benefits of integrating Shared Reading groups as a low-cost, literature-based psychosocial support in cancer organisations. (shrink)

The technique of nuclear transplantation – popularly known as cloning – has been integrated into several different histories of twentieth century biology. Historians and science scholars have situated nuclear transplantation within narratives of scientific practice, biotechnology, bioethics, biomedicine, and changing views of life. However, nuclear transplantation has never been the focus of analysis. In this article, I examine the development of nuclear transplantation techniques, focusing on the people, motivations, and institutions associated with the first successful nuclear transfer in metazoans in (...) 1952. The conflict between embryologists and geneticists over the mechanisms of differentiation motivated Robert Briggs to pursue nuclear transplantation experiments as a way to resolve the debate. Briggs worked at the Lankenau Hospital Research Institute, a research facility devoted to the study of cancer. The goal of understanding cancer would play a role in the development of the technique, and the story of nuclear transplantation sheds light on the role that biomedical contexts play in biological research in the second half of the twentieth century. (shrink)

Men, culture and hegemonic masculinity: understanding the experience of prostate cancer Following a diagnosis of, and treatment for prostate cancer, there is an expectation that men will cope with, adjust to and accept the psychosocial impact on their lives and relationships. Yet, there is a limited qualitative world literature investigating the psychosocial experience of prostate cancer, and almost no literature exploring how masculinity mediates in such an experience. This paper will suggest that the (...) class='Hi'>experience of prostate cancer, the process by which it is investigated, and the way in which it is understood has been shaped by an essentialist interpretation of gender, exemplified by hegemonic masculinity as the archetypal mechanism of male adaptation. In response to this static and limiting view of masculinity, this paper will offer a reframe of hegemonic masculinity. This reframe, being more aligned with common experience, will portray masculinity as a dynamic and contextual construct, better understood as one of a number of cultural reference points around which each man organises and adopts behaviour. It will be suggested that the extant literature, in being organised around hegemonic masculinity, obfuscates the experience of prostate cancer and acts to render covert any collateral masculinities, public or private, that may also be operating. (shrink)

Major problems in cancer chemotherapy are toxicity, resistance, and cancer heterogeneity. A new theranostic paradigm has been proposed by the authors. Many million small molecules (SM) are bound to the proteins extracted from a patient's cancer. SM that also bind proteins extracted from normal human tissues are subtracted from the cancer protein bound SM leaving a large array of SM targeting many sites on each of the cancer biomarkers. Targeting many more than the conventional 1 (...) – 4 cancer biomarkers will reduce development of tumor resistance. After several cycles of selection and counter selection, DNA codes appended to the SM will be PCR amplified to provide templates for restricted libraries of the SM to improve selectivity and sensitivity. The large array of selected and counter selected SM assures that many of the compounds in the array will penetrate the cell membrane and bind to intracellular targets, low tumor resistance, low background for imaging, low therapeutic toxicity, and targeting of the diverse biomarkers present in the heterogeneous mixture of cells in primary and metastatic cancer. Theranostic use of radiolabeled SM binding many sites on many, not necessarily critical, biomarkers provides high cancer cell killing. Experiments to provide proof of principle of this novel concept suggested by the authors. -/- . (shrink)

This paper illustrates a role that bioethics should play in developing and criticizing protocols for breast cancer genetic screening. It demonstrates how a critical bioethics, using approaches and reflecting concerns of contemporary philosophy of science and science studies, may critically interrogate the normative and conceptual schemes within which ethical considerations about such screening protocols are framed. By exploring various factors that influence the development of such protocols, including politics, cultural norms, and conceptions of disease, this paper and the critical (...) bioethics' approach it endorses illuminate and critically assess some of the competing worldviews informing protocol development. One of the frequently neglected worldviews in traditional bioethics' treatment of protocols concerning breast care is constituted by women's own views of their breasts and breast cancer, both within the technologically-oriented social practice of American medicine and in light of the social construction of their breasted experience in American society. This paper attempts to redress and critically assess this neglect on the part of traditional bioethics. Finally, in contrast to traditional bioethics, critical bioethics critically interrogates its own normative and conceptual commitments. In this final capacity, a critical bioethics' approach makes a valuable contribution to the evolution of bioethics. (shrink)

As the spread of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) continues to surge worldwide, our knowledge of coronavirus disease 2019 (COVID‐19) is rapidly expanding. Although most COVID‐19 patients recover within weeks of symptom onset, some experience lingering symptoms that last for months (“long COVID‐19”). Early reports of COVID‐19 sequelae, including cardiovascular, pulmonary, and neurological conditions, have raised concerns about the long‐term effects of COVID‐19, especially in hard‐hit communities. It is becoming increasingly evident that cancer patients are more (...) susceptible to SARS‐CoV‐2 infection and are at a higher risk of severe COVID‐19 than the general population. Nevertheless, whether long COVID‐19 increases the risk of cancer in those with no prior malignancies, remains unclear. Given, the disproportionate impact of the disease on the African American community, yet another unanswered question is whether racial disparities are to be expected in COVID‐19 sequelae. Herein, we propose that long COVID‐19 may predispose recovered patients to cancer development and accelerate cancer progression. This hypothesis is based on growing evidence of the ability of SARS‐CoV‐2 to modulate oncogenic pathways, promote chronic low‐grade inflammation, and cause tissue damage. Comprehensive studies are urgently required to elucidate the effects of long COVID‐19 on cancer susceptibility. (shrink)

BackgroundParents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: investigating the acceptability and usability of the information booklet, determining parental information needs, and collating suggestions for implementation. Finally, we adapted the booklet according to (...) the findings.MethodsWe interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.Results Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. Following dimensions were identified as information needs: communication, support offers, children’s disease understanding and needs, organization of family life, competence in parenting, and sources of additional information material. The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.ConclusionIndicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated. (shrink)

Receiving a diagnosis of cancer can be devastating. Cancer continues to be one of the most feared diagnoses, and experiencing pain is a major fear for people diagnosed with cancer. Cancer pain is complex in aetiology and can be acute or chronic and can be caused by various compression, ischaemic, neuropathic or inflammatory processes. Many people with cancer will experience excruciating pain, which is often underreported and undertreated. The reasons for this are complex and (...) include various factors including fears and beliefs held by patients. Cognitive factors are important modulators of pain and the appraisals, meanings and beliefs that people have in relation to illness, cancer, and pain, have implications in regard to help-seeking behaviours and the coping strategies people adopt. Cancer pain can impact a range of psycho-social factors across its course. Cancer pain relates to higher rates of psychological distress, anxiety and low mood, and the perception of pain intensity is, in turn, influenced by psychological factors. Cancer pain can negatively affect psychological health, and psycho-social factors can affect the pain experience. It has been suggested that people with a life-limiting illness experience ‘total pain’, and this can encompass psychological, social, practical, spiritual domains. Research demonstrates that cancer is predominantly an illness affecting older people, yet there is a higher risk of under-treated pain in this age group and there is a paucity of research into the subjective experiences of older people managing their cancer pain. Many older people are required to self-manage cancer pain at home as outpatients, due to drivers to keep people out of inpatient care, such as the high healthcare costs of inpatient treatment, and patients wanting to manage their illness, and die, at home. Our own research into this area found that the self-management of cancer pain involves a sequential and temporal process, which centres on perceptions of control. We describe how the older people in our study experienced a perceived loss of control, followed by a sense of gaining control over pain through various experience of certain internal and external factors. The assessment and treatment of physical pain should be done in combination with assessment and treatment of psycho-social and spiritual pain, and interventions for cancer pain need to focus on increasing positive affect and reducing helplessness. No person should suffer with poorly controlled pain and we argue for the need for further research in this area to ensure adequate treatment for all.Clinical Implications: Assessment and treatment of physical pain in people with cancer needs to be conducted in combination with assessment and treatment of psycho-social issues and spiritual pain. Psychological and behavioural approaches have strong evidence supporting their efficacy for reducing cancer pain. Interventions should target helplessness and focus on increasing positive affect through positive psychological states including fighting spirit and resilience. Person-centred interventions that focus on helping people with the search for meaning may help those with cancer pain derive positive benefits. (shrink)

This paper by Miles Little and colleagues identified the state they described as “liminal” within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched (...) and challenged its use as a conceptual tool. (shrink)

Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a (...) cancer survivor. Both questionnaires also included questions evaluating the participants’ experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable. (shrink)

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.

Lung cancer is the leading cause of cancer death in women, accompanied by greater psychological distress than other cancers. There is minimal but increasing awareness of the impact of lung cancer stigma (LCS) on patient outcomes. LCS is associated with increased symptom burden and decreased quality of life. The purpose of this study was to explore the experience of female long‐term lung cancer survivors in the context of LCS and examine how participants discursively adhere to (...) or reject stigmatizing beliefs. Findings situated within Cataldo and colleagues' theoretical model include: (1) addiction and tobacco marketing as possible precursors for LCS, (2) the possible role of expert providers as LCS enhancers, (3) response of overlapping complicated identity shifts, (4) simultaneous rejection and assumption of LCS, and (5) information control via advocacy activities as a LCS mitigation response. These findings expand the current understanding of LCS, and call for future conceptual exploration and theoretical revision, particularly with respect to the possibility of interaction between relevant/related stigma(s) and LCS. As the number of women living with lung cancer increases, with longer survival times, the effect of LCS and other experiences of discrimination on patient outcomes could be substantial. (shrink)

The normative dimensions of Internet use among patients and their families have not been studied in much depth in the field of clinical ethics. This study considers cancer-related Internet use among families and friends of cancer patients, and how that use of the Internet may affect patients and patient care. Interviews were conducted with 120 cancer patients, most of whom (76%) reported that family, friends, and others in their social network used the Internet in some way related (...) to the patient’s cancer. Many patients (73%) did not request this online help from their social networks, yet found it helpful and comforting nonetheless. Other patients were less positive about the helpfulness of the online efforts of friends and relatives. A significant proportion of patients (39%) also felt that the online information they received was prescreened or edited in some way. Very few patients recalled that their clinicians ever discussed these and other issues with them. The study illustrates that indirect Internet use is a central feature of the cancer experience. In contrast to other literature in this area, the study suggests that indirect Internet use may have normatively positive and negative implications for patients. These implications point towards the importance of studying and understanding indirect Internet use—and Internet use in general—in the field of clinical ethics. (shrink)

The coronavirus disease 2019 pandemic has strongly affected oncology patients. Many screening and treatment programs have been postponed or canceled, and such patients also experience fear of increased risk of exposure to the virus. In many cases, locus of control, coping flexibility, and perception of a supportive environment, specifically family resilience, can allow for positive emotional outcomes for individuals managing complex health conditions like cancer. This study aims to determine if family resilience, coping flexibility, and locus of control (...) can mitigate the negative affect caused by the pandemic and enhance positive affect in breast cancer patients. One hundred and fifty-four female patients with breast cancer completed the Walsh’s Family Resilience Questionnaire, the Perceived Ability to Cope With Trauma Scale, the Positive-Negative Affect Schedule, and the Mini Locus of Control Scale. Family resilience and internality of locus of control contribute significantly to positive affective responses. Family resilience is responsible for mitigating the negative affect perceived during the pandemic and is enhanced by external locus of control. Evidence suggests that clinical psychologists should develop and propose programs to support oncology patients’ family resilience, coping flexibility, and internal locus of control, allowing for decreased stress and improved adaptability for effectively managing cancer treatment during the pandemic. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Feminist Studies 41, no. 3. © 2015 by Feminist Studies, Inc. 571 Moving through Cancer: An Interview with Carol Collins Artist Carol Collins spoke with Feminist Studies editorial collective member Stephanie Gilmore about her experience of cancer, treatment, and recovery and how it gave rise to an art series that examines what nature means in the midst of unnatural treatments. SG: Carol, thank you for the (...) opportunity to speak with you about your artwork. Having just lost my sister to cancer, your work reminds me of much pain and loss, but also of love and the desire to survive. Before we discuss the work itself, I would like to hear about your journey through cancer, treatment, and recovery. CC: The breast cancer patient’s journey is complex and perilous. When I was healthy, I was ignorant about the magnitude of suffering many cancer patients undergo. And, although I am a private person, I’m now publicly sharing my cancer experience in order to be a voice for those who have suffered through similar treatments—and worse—and those who sadly are no longer with us to tell their story. Being bald and nauseated are not the most awful possible side effects of the treatments, although they are the most well known. Some women survive the cancer but can die from the treatments, or others suffer through the treatments and die anyway. Often, it seems many believe patients can overcome their 572 Carol Collins adversity solely with positive thinking and persistence. However, not discussing the array of physical and psychological damage that even those with good prognoses incur propagates ignorance about this malady. I hope that my artwork and story will promote a deeper understanding of a breast cancer patient’s plight and will encourage more support for research for individualized therapies and prevention. My cancer journey began when I received a breast cancer diagnosis in January 2014. Life just before that point was good; the future was bright. Tendon pain, caused by my flat feet and a lot of exercising, was my only known ailment. But one day a routine mammogram revealed three tumors in my right breast. The radiology oncologist said the masses were highly likely to be cancerous, so he immediately did painful core biopsies at the sites of my three tumors. The next day, it became clear that we needed to act quickly. The biopsy results revealed I had a very aggressive invasive breast cancer with estrogen, progesterone, and HER2 receptors. Breast cancer in premenopausal women grows quickly due to the high level of hormones present. The oncologists and surgeons said I would, at a minimum, need a mastectomy and possibly lymph node resection, and they warned that I would likely need chemotherapy, which would destroy my eggs and ovaries. After learning of my limited options, I approved the removal of one breast and my sterilization. I knew I needed to think rationally and face the giant raven before me head on. However, I did not realize the magnitude and multitude of physical and psychological pains, illnesses, and losses that were soon to come. The first year of cancer treatments inflicted much physical pain. I received three extremely painful injections into my right breast with a radiolabeled colloid just prior to the mastectomy. The pain came from the injected dye, not from the needle. The modified radical mastectomy was more excruciatingly painful than I anticipated, even with painkillers and overnight hospitalization. Breast reconstruction was an option that added more pain and discomfort from weekly fillings of the installed “expander” and additional surgeries. Extreme pain after the mastectomy prevented me from lying down for months. Foolishly, I did not get an injection port installed in my chest. Instead, I endured numerous deep (and often unsuccessful) needle pricks into the seemingly few veins of my left arm (which still had its lymph nodes) that were appropriate for infusions over the period of a year. Shooting pains across my chest and arm were the norm. Carol Collins 573 In addition to the surgically induced physical pain, the chemotherapy quickly caused a myriad of undesirable physical side effects. It is scary to realize that the medical community does not often fully understand... (shrink)

There has been increased interest in what the philosophical subdiscipline of phenomenology can contribute to medical humanities due to its dual emphases on practicality and its attempt to understand the experience of others, thus positioning it as a potentially helpful conceptual toolkit to guide clinical care. Using various figures from the phenomenological tradition, most prominently Martin Heidegger and Martin Buber, the authors illuminate relevant philosophical concepts, employ them in various examples, and provide three principles revolving around empathy, communication, and (...) listening to patients’ individual values to guide medical professionals who practice the art of medicine in cancer care settings. (shrink)