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)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous (...) empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

Objectives: The objectives of the study were to assess similarities and differences between breast cancer patients and their husbands in terms of doctor-patient/spouse relationships and shared decision making; and to investigate the association between breast cancer patients and husbands in terms of preference of type of doctor, doctor-patient relationship, and shared decision making regarding medical treatment. Method: Fifty-seven women with breast cancer, and their husbands, completed questionnaires measuring doctor-patient/spouse relationships, and decision making regarding medical (...) treatment. Results: Patients believe they have a key role in the medical decision-making process and that the participation of their husbands, and their agreement with the decision, is important. Both breast cancer patients and their husbands prefer a shared decision-making process to paternalistic or autonomy-based approaches. Conclusion: In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, this study reflects a practical recognition of the role of the breast cancer patient's husband in the decision-making process. It also reflects a relational rather than an individualistic perception of patient autonomy. (shrink)

AimTo examine the relative cost-effectiveness of predictive genetic tests for familial breast and ovarian cancer provided by Genetic Services of Western Australia.MethodsThe relative cost-effectiveness was assessed using a decision analytic model.ResultsThe cost and outcomes of genetic testing was compared in first-degree relatives of known BRCA1/2 mutation-carriers who have a 50% risk of carrying the mutated gene (intervention group) to individuals with the same a priori risk but who do not undergo a genetic test (control subjects).Since genetic testing (...) enables the restriction of intensive surveillance to individuals with an identified BRCA1/2 gene mutation, net savings in the period observed (age 25-70) were $980-$1008 per woman in the ovarian intervention group and $1681-$1795 per woman in the breast intervention group, and delayed the onset of breast cancer (6mths BRCA1, 3mths BRCA2).Compared to control subjects undergoing population surveillance, it was estimated the onset of breast cancer could be delayed at a total net cost of $3055 (5.1yrs) to $3389 (3.2yrs) for women in the breast intervention group with BRCA1/2 mutations. Since population surveillance is not currently recommended for ovarian cancer, control subjects undergoing no surveillance were compared with the intervention group. The onset of ovarian cancer was delayed at a net cost of $1630 (3.5yrs) to $2509 (1.2years) for women with BRCA1/2 mutations.ConclusionsTesting allows targeted high-level surveillance for gene mutation carriers, which ensures the cost-effective use of resources and reduces cancer-related morbidity if clinical recommendations for intervention are adopted. (shrink)

The transforming growth factors beta are a family of peptides which are involved in the regulation of cell growth and differentiation. It has been suggested that the loss of sensitivity to growth inhibition by endogenous TGF‐β may contribute to the process of carcinogenesis in epithelial systems. However, many breast cancer cells remain sensitive to the growth inhibitory effects of these peptides, suggesting that the local induction of TGF‐β could provide a pharmacological approach to chemoprevention. Triphenylethylene anti‐oestrogens, synthetic progestins (...) and retinoids all offer potential as chemopreventative agents. A common feature of their mechanism of action is the ability to locally increase the production of the transforming growth factors beta. (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)

In November 2003, researchers at Cambridge University announced they had identified a gene associated with an elevated risk of breast and related ovarian cancers. The gene—christened EMSY in honor of a breast-cancer nurse who is the sister of the study's lead author—is particularly significant because it is linked to so-called sporadic cancers. Such cancers do not arise from hereditary mutations of the BRCA1 and BRCA2 genes, in which genes that ordinarily prevent breast and ovarian cancers are (...) altered, often giving rise to multiple cases of cancer within a family as the mutation is passed along. The Cambridge researchers determined that the presence of extra copies of EMSY in an individual may instead switch off a healthy BRCA2 gene. (shrink)

Background: Previous studies on the effectiveness of psychological interventions in oncology mainly used quantitative measures and no study was conducted with regard to both caregivers and patients. Aim: This study evaluates the effectiveness of psychoeducational support groups, both for women with breast cancer, and for their informal caregivers through the use of quantitative and qualitative measures. Methods: A longitudinal design was used comparing two psychoeducational support groups with other two groups in a standard care control condition. Participants were (...) 28 women with a diagnosis of breast cancer in the care of a hospital in Northern Italy, and 21 family caregivers. The quantitative data were collected by Cognitive Behavioral Assessment for Outcome Evaluation (CBA-OE) and the qualitative data through the use of semi-structured interviews. Results: The statistical analysis showed a significant change attributable to the psychological intervention that proves the effectiveness of such an intervention in the patients’ and caregivers’ group. The qualitative analysis allowed us to interpret the behavioral and psychological profile emerging from CBA-OE, by considering the subjective experience of the treatment groups. The group experience offered affective, relational and informative support, and allowed participants to create a network and to feel understood and reassured. Conclusions: The results suggest the usefulness of psychoeducational support groups for women with breast cancer and for their caregivers. The value of this kind of intervention is not only at an individual level but also at a systems level, and family involvement ensures the best positive outcomes. (shrink)

Women who had had breast cancer and had been enrolled in a large genetic breast cancer epidemiological study were interviewed about their experience of participation in the study, their attitudes to the confidentiality of data, and the feedback of personal and general research results. Collection of family history information seemed more salient in indicating the genetic nature of the study than the enrolment information sheet. There were no concerns about confidentiality.While participants would have welcomed general feedback (...) about the results of the study and were critical that this had not been provided, the feedback of personal information proved complicated and, sometimes, difficult. It is suggested that individual feedback of genetic test information in epidemiological studies should be undertaken only when there are specific reasons. (shrink)

Language holds great importance within clinical encounters, particularly when healthcare professionals are dealing with life-threatening diseases, such as cancer. This study is an attempt to explore the perceptions of women under treatment for breast cancer in Karachi, Pakistan, with respect to language employed by healthcare professionals for the disclosure of disease, and the impact that language used has on patients. Using exploratory qualitative methods consisting of 24 in-depth interviews with patients and one interview with a healthcare professional, (...) this study reveals various nuances of language at play. We find that in Pakistani society, there is reluctance to use the word “cancer” during the disclosure of disease by healthcare professionals, family members and patients alike due to fear of imminent death and to retain hope in patients. Instead, colloquial language, such as “rasoli [mass]” and “this illness” is used to refer to the disease. The disease is disclosed with a deliberate attempt to avoid the use of the word “cancer”, and often done in a series of steps rather than the diagnosis being spelt out bluntly, with the former practice generally preferred than the latter. Despite this manner of disclosure, patients remain aware that they are suffering from a disease. This has important implications for clinicians in Pakistan, where there are no standardized practices for breaking bad news, and where clinicians have to tailor their communication styles according to the type of patient, thus the onus rests on physicians to impart information in an empathetic manner to patients suffering from serious diseases. (shrink)

In this paper we explore the rise of ‘the breast cancer gene’ as a field of medical, cultural and personal knowledge. We address its significance in the Norwegian public health care system in relation to so-called biological citizenship in this particular national context. One of our main findings is that, despite its claims as a measure for health and disease prevention, gaining access to medical knowledge of BRCA 1/2 breast cancer gene mutations can also produce severe (...) instability in the individuals and families affected. That is, although gene testing provides modern subjects with an opportunity to foresee their biological destiny and thereby become patients in waiting, it undoubtedly also comes with difficult existential dilemmas and choices, with implications that resonate beyond the individual and into different family and love relations. By elaborating on this finding we address the question of whether the empowerment slogan, which continues to be advocated through various health, BRCA and breast cancer discourses, reinforces a naïve or an idealized notion of the actively responsible patient: resourceful enough to seek out medical expertise and gain sufficient knowledge, on which to base informed decisions, thereby reducing the future risk of developing disease. In contrast to this ideal, our Norwegian informants tell a different story, in which there is no apparent heroic mastery of genetic fates, but rather a pragmatic attitude to dealing with a dire situation over which they have little control, despite having complied with medical advice through national guidelines and follow-up procedures for BRCA 1/2 carriers. In conclusion we claim that the sense of safety that gene testing and its associated medical solutions allegedly promise to provide proved illusory. Although BRCA-testing offers the potential for protection from adverse DNA-heritage, administered through possibilities for self-monitoring and self-management of the body, the feeling of ‘being in good health’ has hardly been reinforced by the emergence of gene technology. (shrink)

As a university professor, an environmentalist, and a world-traveller, Sue Hendler was thriving. Then she was diagnosed with metastatic breast cancer. She had to give up her job, make hard decisions about medical treatment, and drastically shorten her vision of the future. As her cancer spread, she ironically acquired a new identity as a cancer "survivor." Compelled to find meaning in her "new normal" of life with a fatal disease, she decided to write for a wider (...) audience. In Dying in Public: Living with Metastatic Breast Cancer, Hendler talks about her experiences of undergoing surgery, taking steroids, receiving chemotherapy, and enrolling in a clinical drug trial. As her condition worsens she remains committed to living fully. She struggles with writing a bucket list, discusses her "legacy," and talks about her feelings of anger and the importance of love. She also describes how she lived, towards the end, with the support of the members of her "Care Team," a group of over thirty friends, family, and health care workers who enabled her to remain at home until the day before her death. This honest, witty, and unsentimental depiction of "dying in public" is a profound tribute to a life well lived. (shrink)

_The Tender Bud_ is the moving story of one woman's journey through breast cancer. The woman in question happens to be a senior psychiatrist of broad learning and deep clinical insight. Madeleine Meldin weathered the crisis of breast cancer without the support of an immediate family and in the context of ongoing professional burdens. This book is the journal that she wrote for herself as an aid to coping with the personal upheaval of diagnosis, mastectomy, and (...) the aftermath of treatment. It was written while these events unfolded. With arresting candor, Meldin chronicles her emotions at each stage of her odyssey - the recurrent cycles of denial, anxiety, and despair; the conflicting feelings engendered by her physicians, surgeons, and the treatment "establishment" in general; her struggle between resignation and emergent hopefulness. Unique to Meldin's account is her ongoing juxtaposition of the different dimensions of "having cancer." Simply and gracefully, she chronicles the everyday dimension of cancer, with its obligation to proceed maturely and dispassionately with medical and surgical care, to meet one's professional responsibilities, to maintain the appearances that allow one to carry on with one's life. Meldin excels at showing how even the most mundane experiences of everyday life - conversations with friends and colleagues, the selection of clothes, a trip to the hairdresser - became saturated with her illness, with her sense of herself as a cancer patient. (shrink)

_The Tender Bud_ is the moving story of one woman's journey through breast cancer. The woman in question happens to be a senior psychiatrist of broad learning and deep clinical insight. Madeleine Meldin weathered the crisis of breast cancer without the support of an immediate family and in the context of ongoing professional burdens. This book is the journal that she wrote for herself as an aid to coping with the personal upheaval of diagnosis, mastectomy, and (...) the aftermath of treatment. It was written while these events unfolded. With arresting candor, Meldin chronicles her emotions at each stage of her odyssey - the recurrent cycles of denial, anxiety, and despair; the conflicting feelings engendered by her physicians, surgeons, and the treatment "establishment" in general; her struggle between resignation and emergent hopefulness. Unique to Meldin's account is her ongoing juxtaposition of the different dimensions of "having cancer." Simply and gracefully, she chronicles the everyday dimension of cancer, with its obligation to proceed maturely and dispassionately with medical and surgical care, to meet one's professional responsibilities, to maintain the appearances that allow one to carry on with one's life. Meldin excels at showing how even the most mundane experiences of everyday life - conversations with friends and colleagues, the selection of clothes, a trip to the hairdresser - became saturated with her illness, with her sense of herself as a cancer patient. (shrink)

This article presents the results of a study that investigates the way in which carriers of a mutation on the BRCA1 or the BRCA2 gene, associated with a high risk of breast and ovarian cancer, make their reproductive decisions. Using semi-structured interviews, the study explored the way in which these persons reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, the arguments they used in favor or against taking that risk, and (...) in the light of these arguments, their opinion on the acceptability of preimplantation genetic diagnosis (PGD) as a reproductive option. The findings suggest that when carriers are planning to have a(nother) child, they are mainly concerned by the risk of transmitting ‘much more than a gene’: essentially painful experiences not only with respect to health, such as undergoing cancer surveillance or combatting one’s own illness, but also with regards to family life, such as witnessing the illness and death of a close relative, encountering difficulties in finding a partner or reconsidering one’s plans to have a family. As for opinions concerning the acceptability of PGD as a reproductive option, opinions about personal recourse were varied but all expressed the understanding that PGD should be made available to those persons who consider it their best option. (shrink)

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as (...) it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

Familial clustering of a disease is defined as the occurrence of the disease within some families in excess of what would be expected from the occurrence in the population. It has been demonstrated for several cancer types, ranging from rare cancers as the adenomatosis-coli-associated colon cancer or the Li-Fraumeni syndrome to more common cancers as breast cancer and colon cancer. Familial clustering, however, is merely an epidemiological pattern, and it does not tell whether (...) genetic or environmental causes or both in combination are responsible for the familial clustering. Familial clustering may be due to genetic predisposition to the disease, but exposure to environmental factors — shared by members of some families, but not by members of other families — may also cause familial clustering and hence mimic genetic inheritance in the study of nuclear families. Based on assumptions regarding the individual steps in the biological process starting with exposure to carcinogens and ending with death from disseminated cancer we suggest that genetic and environmental factors may both be involved in most of these steps. The present paper focuses on research methodologies necessary to discriminate between the effect of genes and family environment in the development of cancer. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bringing Cancer Care to Those who Don't Have ItLawrence N. ShulmanI have been treating cancer patients in the Harvard Medical School hospitals since 1977, and in those 35 years we have made tremendous progress. Though work still needs to be done, and far too many patients still die of cancer, many are cured. In particular, children and young adults have a high rate of cure from (...) such diseases as Hodgkin's lymphoma, non-Hodgkin's lymphoma, acute lymphoblastic leukemia, and childhood sarcoma. Patients with breast cancer in the US have a greater than 80% chance for long-term survival. The death rate from cervical cancer in the US is very low. These results have been achieved by making diagnoses earlier, in many cases surgical excision, and often systemic therapies such as chemotherapy, hormonal therapy, radiation therapy, and more recently by using so-called "targeted" therapies—those directed at particular molecular characteristics of the cancer cells.Princess Dina Mired has said that the opportunity to survive cancer should not be an accident of geography. In cases where we already have effective and inexpensive tools to cure cancer, these treatments should be considered a basic human right, a life-saving medical service.I met Patty, a young woman living in the U.S. during November of her senior year in high school, after she discovered a small lump above her left collar bone. Though she felt entirely well, she called her primary care doctor who saw her the next day, felt the enlarged lymph node, and referred her to a surgeon, who did a biopsy later that week. Her primary care doctor also called me, and we scheduled a visit when the pathology results were available. The following week the pathologist notified Patty's pediatrician that the biopsy showed Hodgkin's lymphoma. When I met Patty, she was a bright and focused young woman, waiting to hear about her college applications and enjoying her senior year. Her cancer diagnosis was completely out of context with her life as she planned it, but with the support of her family and boyfriend, she seemed prepared to take things one step at a time. A PET CT scan demonstrated a modest mass in the mediastinum (chest), but no other disease. She was in an early stage of the disease with an excellent prognosis. We recommended and administered six months of chemotherapy with doxorubicin, bleomycin, vinblastine, and dacarbazine—four chemotherapy agents that are off-patent, and relatively inexpensive. She lost her hair, not a trivial issue for her, but otherwise felt reasonably well during the treatment. She was determined to graduate with her classmates, and was able continue to attend school and keep up with her work. In June, seven months into her cancer diagnosis and treatment, she graduated with honors, and was on track to enroll in college in September.Like other 18-year-old women with Hodgkin's lymphoma, Patty had an over 80% chance for cure with the potential for a long and productive life ahead of her because we could perform a biopsy, make a diagnosis, and safely and effectively treat her with four inexpensive, off-patent, chemotherapy drugs. She had nearly the same likelihood of living a long and fruitful life as her classmates, and had the same chances for childbearing. In my line of work, with the knowledge we now possess, to allow someone like Patty to die without a chance of curative care is simply unacceptable. Treatment of curable cancers should be considered on par with the right to clean water, adequate nutrition, treatment for infectious disease, and access to maternal and child healthcare services.But in many places in the world, people with cancers we could easily eradicate in Boston have no access to cancer services, and do die unnecessarily. The local healthcare infrastructure has no [End Page E10] capacity to evaluate a patient, perform or process a biopsy, make a diagnosis, or treat the patient with potentially curative surgery, chemotherapy and radiation. I have rounded on the wards of hospitals in developing countries, stopping to talk with numerous patients like Patty: young women, some of whom might have had Hodgkin's lymphoma, but no... (shrink)

In recent years, the research participant’s family’s need, if not right, to know their disease risk has comprised a great deal of the genetic testing discourse. This most often arises in the context of clinical genetic tests for hereditary cancers, especially colorectal and breast cancer, and other genetic disorders where the presence of a genetic mutation greatly increases the likelihood of the disease’s manifestation. However, this discussion has not led to comprehensive or cohesive guidance for health care professionals (...) or patients. Indeed, various governmental and professional bodies run the gamut of possibilities, from no disclosure to family without the consent of the patient, to recognition that genetic risk information is important enough to the family to allow exception to traditional notions of confidentiality. (shrink)

The Knowledge Based System for Diagnosing Breast Cancer is used to assist medical students to improve their education on diagnosis and counseling the process of analyzing the biopsy image of the microscope, determining the type of tumor and the treatment method for each case and identifying the disease related questions. According to the Ministry of Health in its annual report in Gaza, between 2009 and 2014 there are 7069 cases of breast cancer, and in 2014 there (...) are 1502 cases of breast cancer . We are now in the age of visual information where 65% of the populations are visual learners; the Knowledge Based System is the easiest way to ensure students remember the information in the long term, using visual and textual information. The Knowledge Based System has an easy-to-use interface to help students diagnose the disease and enhance their information about the disease; the system can be used on smart phones. This Knowledge Based System can be divided into three main parts: The first part is specific questions for the patient, to help student to know questions type. The second part is the process of analyzing the biopsy sample image, to see if the biopsy image is intact or infected. The last part is the video shows ways to treat breast cancer in the form of animation. (shrink)

Twitter integrates with streaming data technologies and machine learning to add new value to healthcare. This paper presented a real-time system to predict breast cancer based on streaming patient’s health data from Twitter. The proposed system consists of two major components: developing an offline building model and an online prediction pipeline. For the first component, we made a correlation between the features to determine the correlation between features and reduce the number of features from the Breast (...) class='Hi'>Cancer Wisconsin Diagnostic dataset. Two feature selection algorithms are recursive feature elimination and univariate feature selection algorithms which are applied to features after correlation to select the essential features. Four decision trees, logistic regression, support vector machine, and random forest classifier have been used on features after correlation and feature selection. Also, hyperparameter tuning and cross-validation have been applied with machine learning to optimize models and enhance accuracy. Apache Spark, Apache Kafka, and Twitter Streaming API are used to develop the second component. The best model with the highest accuracy obtained from the first component predicts breast cancer in real time from tweets’ streaming. The results showed that the best model is the random forest classifier which achieved the best accuracy. (shrink)

Plasminogen activator inhibitor‐1 (PAI‐1) is a physiological inhibitor of urokinase (uPA), a serine protease known to promote cell migration and invasion. Intuitively, increased levels of PAI‐1 should be beneficial in downregulating uPA activity, particularly in cancer. By contrast, in vivo, increased levels of PAI‐1 are associated with a poor prognosis in breast cancer. This phenomenon is termed the “PAI‐1 paradox”. Many factors are responsible for the upregulation of PAI‐1 in the tumor microenvironment. We hypothesize that there is (...) a breast cancer predisposition to a more aggressive stage when PAI‐1 is upregulated as a consequence of Metabolic Syndrome (MetS). MetS exerts a detrimental effect on the breast tumor microenvironment that supports cancer invasion. People with MetS have an increased risk of coronary heart disease, stroke, peripheral vascular disease and hyperinsulinemia. Recently, MetS has also been identified as a risk factor for breast cancer. We hypothesize the existence of the “PAI‐1 cycle”. Sustained by MetS, adipocytokines alter PAI‐1 expression to promote angiogenesis, tumor‐cell migration and procoagulant microparticle formation from endothelial cells, which generates thrombin and further propagates PAI‐1 synthesis. All of these factors culminate in a chemotherapy‐resistant breast tumor microenvironment. The PAI‐1 cycle may partly explain the PAI‐1 paradox. In this hypothesis paper, we will discuss further how MetS upregulates PAI‐1 and how an increased level of PAI‐1 can be linked to a poor prognosis. BioEssays 29:1029–1038, 2007. © 2007 Wiley Periodicals, Inc. (shrink)

Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, (...) at the Tikur Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (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)

The purpose of this study was to compare breast cancer patients' perceived partici pation in their own care with nurses' perceptions of such participation. Both groups reported that patients are able and willing to take part in their own care more actively than allowed under the present health care system. Nurses also reported that they do provide patients with opportunities for participation.

Cancer is a chronic disease that causes the most deaths in the world, being a public health problem nowadays. Even though breast cancer affects the daily lives of patients, many women become resilient after the disease, decreasing the impact of the diagnosis. Based on a positive psychology approach, the concept of co-vitality arises understood as a set of socio-emotional competencies that enhance psychological adaptation. In this sense, emotional intelligence is one of the main protective factors associated with (...) resilience. However, it is not always as beneficial as it seems, and can lead to collateral effects on psychological adjustment. Given this controversy, this study aims to find the specific processes through which the dimensions of Perceived Emotional Intelligence can act as a risk or protective factor in the development of resilience. The total sample was 167 women, 46.7% were breast cancer survivors, and 53.3% were healthy controls. The selection of women with breast cancer carries out randomly, recruited through the Oncology Units. The sample completed measures of resilience and PEI, through Resilience Scale and TMMS-24. The results showed that breast cancer survivors showed higher age and greater levels of resilience and mood repair than healthy women. The mediation analysis revealed that breast cancer survival and PEI predicted 28% of the variance of resilience. The direct effects showed that emotional clarity and mood repair increased resilience levels. Although breast cancer did not predict resilience directly, it does through mood repair by an indirect process. Besides, the analysis showed that emotional attention played a role in vulnerability, decreasing mood repair, and resilience. These research support theories that point to a possible dark side of PEI, thus, a great level of emotional attention makes dark the positive effect of mood repair and personal growth if a clear perception of emotions does not complement it. These results provide empirical support concerning the need to work complementary each dimension of PEI to avoid unwanted effects on intrapersonal adjustment. (shrink)

PurposeThis study aims to develop and validate a stigma scale for Chinese patients with breast cancer.MethodsPatients admitted to the Affiliated Cancer Hospital of Xiangya School of Medicine, Central South University, for breast cancer treatment participated in this study. Development of the Breast Cancer Stigma Scale involved the following procedures: literature review, interview, and applying a theoretical model to generate items; the Breast Cancer Stigma Scale’s content validity was assessed by a Delphi (...) study and feedback from patients with breast cancer ; exploratory factor analysis was used to assess the construct validity; convergent validity was assessed with the Social Impact Scale ; internal consistency Cronbach’s α, split-half reliability, and test–retest reliability were used to identify the reliability of the scale.ResultsThe final version of the Breast Cancer Stigma Scale consisted of 15 items and showed positive correlations with the Social Impact Scale. Exploratory factor analysis revealed four components of the Breast Cancer Stigma Scale: self-image impairment, social isolation, discrimination, and internalized stigma, which were strongly related to our perceived breast cancer stigma model and accounted for 69.443% of the total variance. Cronbach’s α for the total scale was 0.86, and each subscale was 0.75–0.882. The test–retest reliability with intra-class correlation coefficients of the total scale was 0.947, and split-half reliability with intra-class correlation coefficients of the total scale was 0.911. The content validity index was 0.73–1.0.ConclusionThe newly developed Breast Cancer Stigma Scale offers a valid and reliable instrument for assessing the perceived stigma of patients with breast cancer in clinical and research settings. It may be helpful for stigma prevention in China. (shrink)

Perhaps no other medical advocacy movement has been as successful as breast cancer advocacy in increasing awareness and funds. Recent decades have seen a division between a “green” environmental advocacy aimed at prevention and a “pink” advocacy focused on fund-raising for a cure. The movement has largely failed to address the implications of corporate control over genetic testing, as reflected by the involvement of only one breast cancer organization in the lawsuit against Myriad Genetics Laboratory, which (...) held patents on the BRCA 1/2 genes. This article argues that the reason for this failure is an unwillingness to challenge the role that corporations play in advocacy. (shrink)

ObjectiveMost young adults diagnosed with breast or gynecologic cancers experience adverse reproductive or sexual health outcomes due to cancer and its treatment. However, evidence-based interventions that specifically address the RSH concerns of young adult and/or LGBTQ+ survivor couples are lacking. Our goal is to develop a feasible and acceptable couple-based intervention to reduce reproductive and sexual distress experience by young adult breast and gynecologic cancer survivor couples with diverse backgrounds.MethodsWe systematically adapted an empirically supported, theoretically grounded (...) couple-based intervention to address the RSH concerns of young couples coping with breast or gynecologic cancer through integration of stakeholder perspectives. We interviewed 11 couples with a history of breast or gynecologic cancer to review and pretest intervention materials. Three of these couples were invited to review and comment on intervention modifications. Content experts in RSH and dyadic coping, clinicians, and community advisors participated throughout the adaptation process.ResultsFindings confirmed the need for an online, couple-based intervention to support young couples experiencing RSH concerns after breast or gynecologic cancer. Qualitative themes suggested intervention preferences for: A highly flexible intervention that can be tailored to couples’ specific RSH concerns; Active steps to help members of a dyad “get on the same page” in their relationship and family building plans; A specific focus on raising partners’ awareness about how cancer can affect body image and physical intimacy; and Accessible, evidence-based information about RSH for both partners. These results, along with feedback from stakeholders, informed adaptation and finalization of the intervention content and format. The resulting virtual intervention, Opening the Conversation, includes five weekly sessions offering training to couples in communication and dyadic coping skills for addressing RSH concerns.ConclusionThe systematic adaptation process yielded a theory-informed intervention for young adult couples facing breast and gynecological cancers, which will be evaluated in a randomized controlled trial. The long-term goal is to implement and disseminate Opening the Conversation broadly to reach young adult couples with diverse backgrounds who are experiencing RSH concerns in cancer survivorship. (shrink)

Breast cancer is a major public health challenge. Organized mammography screening (OS) is considered one way to reduce breast cancer mortality. EU recommendations prone mass deployment of OS, and back in 2004, France introduced a national OS programme for women aged 50–74 years. However, in 2012, participation rate was still just 52.7%, well short of the targeted 70% objective. In an effort to re-address the (in) efficiency of the programme, the French National Cancer Institute has (...) drafted an expert-group review of the ethical issues surrounding breast cancer mammography screening. (shrink)

Breast cancer screening aims to help women by early identification and treatment of cancers that might otherwise be life-threatening. However, breast cancer screening also leads to the detection of some cancers that, if left undetected and untreated, would not have damaged the health of the women concerned. At the time of diagnosis, harmless cancers cannot be identified as non-threatening, therefore women are offered invasive breast cancer treatment. This phenomenon of identifying non-harmful cancers is called (...) overdiagnosis. Overdiagnosis is morally problematic as it leads to overall patient harm rather than benefit. Further, breast cancer screening is offered in a context that exaggerates cancer risk and screening benefit, minimises risk of harm and impedes informed choice. These factors combine to create pathogenic vulnerability. That is, breast cancer screening exacerbates rather than reduces women’s vulnerability and undermines women’s agency. This paper provides an original way of conceptualising agency-supporting responses to the harms of breast cancer overdiagnosis through application of the concept of pathogenic vulnerability. (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)

Thinking Through Breast Cancer is a philosophical analysis of breast cancer inspired by the author's journey as a breast cancer patient. It sets out to show the relevancy of philosophical thinking in medicine today and shares advice about how to navigate the uncertainty of breast cancer diagnosis, treatment, and survival.

The three claims put forward by Dr. Roger Poisson to rationalize his enrollment of ineligible subjects in clinical trials do not justify research fraud. None the less, certain lessons for the conduct of clinical research can be learned from the affair: experimental therapies should be made available to technically ineligible subjects when no effective therapy exists for their disease; further research must investigate the possible benefits of clinical-trial participation; broadly based, pragmatic trials must be regarded as the ideal model; and (...) each eligibility criterion in a clinical-trial protocol should be justified. (shrink)

An ex-voto (from the Latin for ‘from the vow’) is an image made to express the patron's gratitude for divine assistance in the face of personal difficulty. Here, we describe a late 18th century Mexican painting that shows Doña Josefa Peres Maldonado undergoing a mastectomy, and, as an ex-voto, expresses her thanks for divine aid in having survived the operation. As such, the painting manifests Doña Josefa's response to her disease, drawing on both medical and religious sources of support. This (...) brief report analyses the unusual double dedication of the ex-voto, the elaborate home altar it depicts and the surgical technique it demonstrates. (shrink)

This paper analyses the immunological response of breast cancer patients through the lens of medical semiotics. From this perspective both psychological and physiological symptoms are treated as a set of transitive signs. The symptomatic journey of breast cancer patients was documented through an ethnographic engagement with a breast cancer charity. This journey consists of diagnosis, treatment and remission, where both the physical and psychological trauma maybe irreversible. Equally the genetic disposition of each patient and (...) the variability of the treatment give rise to a plethora of possible immunological responses. The case study organization provided both therapeutic treatment but also sold oncology products to its patients, matching the products’ composition to the specific immunological responses caused by breast cancer treatment, e.g., brittle skins or hair loss, etc. This paper explores how the varied and transient nature of immunological semiosis is identified and commoditized into an economic process. This challenging social context is of interest from a semiotic stand point because it offers a singular paradigm to explain the evolution of signs and symptoms into sales. (shrink)

This is a personal essay about breasts. It focuses on my experiences as a young girl, moving through adolescence to a history of breast cancer in my family, including my mother’s breast cancer diagnosis. As a physician, patient, and wife, I reflect on the choices that I have to make and what this means for my identity as a woman and mother.

Living in modern biopolitical risk culture might be seen as synonymous with living in prognosis time, in the sense that risk of illness is endlessly forecast (prognosticated) in the broad social arena. ‘Safety,’ in this context, is framed as the anticipatory guarding against risk or disease in order to ‘make live.’ Thinking of risk and safety in these ways is limited, however, in that the prognosis cannot account for the individual’s life or death drama. This paper asks: how are we (...) to understand the constellation of risk, prognosis, and safety in relation to ‘the subject in breast cancer prognosis’? (shrink)