Thesis advisor: Pamela J. Grace / Purpose/Specific Aims: Van Manen’s hermeneutic phenomenological method was used to design this study aimed at better understanding the meaning of day-to-day living with advanced breast cancer in young women. Rationale/Significance of Study: There is a gap in knowledge about the particular needs and daily life experiences of this cohort. Very little data specifically addresses this population. The limited literature that exists suggests that, due to the particular stage of life, their needs differ from those at other life stages as well as those coping with earlier stages of breast cancer. These women have described themselves as being invisible and having to live with the knowledge that their future is uncertain. Thus, this qualitative study is an important initial step in expanding our understanding of what daily life is like for this population. Sample and Recruitment: Women aged 25–39 with Stage III or IV breast cancer were purposively recruited via private FacebookTM groups specifically for women with breast cancer. The final sample consisted of 12 participants from across the U.S. Incidentally, all were parents. Data Analysis: Data were collected through two or more semistructured interviews and written journals. Analysis followed van Manen’s method of immersion, reading, and rereading, and using manual coding and NVivo software to develop themes to capture the participants’ lifeworlds. Findings: The meaning of their experiences is captured by the overarching theme: Wearing the mask of wellness in the presence of life-threatening illness. Five major themes were identified: Wanting to be known as the person I am, I’m still Mom, Living is more than surviving, Getting through it, and Being connected to others. Conclusions: Findings highlight that these young women are managing multiple roles and responsibilities despite the ongoing challenges of treatment and symptom management. They feel that their needs and struggles are not well understood because to outsiders they do not look ill. This study provides a base for further research and eventually interventions. / Thesis (PhD) — Boston College, 2018. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Recent research into advanced breast cancer has suggested that young women in general tend to have more aggressive disease, present at a later stage of disease progression and suffer many more issues and concerns than their older counterparts. Whilst breast cancer in women in general has been the target of a vast amount of research and public attention, values and beliefs surrounding advanced breast cancer have not been a focus of concern. The aim of this thesis is to explore scientific journals, the media and to listen to the young women themselves in order to identify the understandings of advanced breast cancer in young women and the ways in which these understandings are perpetuated and sustained over time. The goal is to illuminate the various discourses that are currently being drawn upon to understand this life-limiting illness and the impact these discourses have on the lives of young women concerned. Poststructuralism is the theoretical perspective within which this thesis is located. This approach allowed for a focus on language, power and text. Discourse analysis of three data sets was used. These data sets were drawn from scientific and medical journals (251), medical texts (5), clinical practice guidelines (2), newspaper articles (230) and transcribed conversations with 12 young women diagnosed with advanced breast cancer. The main discourses identified within and across the various data sets were; the discourse of numeracy, the discourse of tragedy and several discourses of the body; the thin body, the declining body, the object body and the gendered body. While the emphasis of each of these discourses varied across the three data sets, they were all present in each to some degree, reflecting broader cultural stories within which the individual stories are located. Young women diagnosed and living with advanced breast cancer are currently being portrayed as living with a tragic disease, controlled and constrained by the statistics and probabilities and played out within and on a body in ‘perpetual disintegration’. The discourses of tragedy, numeracy and the thin, object, gendered and declining body all relate to larger stories of what it is to be dying before one’s time in Western society today.

This qualitative study examined the phenomenology of advanced breast cancer (ABC) among 7 female participants between the ages of 20 and 45. Oral data were collected to extract participants' interpretations of their spiritual and psychosocial experiences of living with ABC. Findings suggest that these women experienced a dichotomous relationship with regard to their bodies and their relationships with others; this served as a means of making sense of their experiences and as a coping mechanism. Positive psychology and the theory of reasoned action and planned behavior provided the theoretical framework for examining the role of social reinforcements, beliefs, and attitudes and intentions on the health behavior of pre-menopausal African American women with ABC in Northern and Southern Delaware. Additionally, the theoretical framework provided answers to the overarching questions of how pre-menopausal African American women with advanced breast cancer applied meaning-making and spirituality to find purpose in their diagnosis. Inductive analysis of their narrative data suggested a set of themes: the body as a medical object, the body as a feminine object, honesty in relationships, missed opportunities from healthcare professionals, from wounded to mended, and the joy of purposeful living. The participants reported that an intimate relationship with God helped them feel supported in a way that family and friends could not. The findings in this study support potential spiritual and meaning-making interventions as well as promote a more positive quality of life for pre-menopausal women living with advanced breast cancer.-¬-¬-¬

Bröstcancer är den vanligaste cancerformen bland kvinnor runt om i världen, vilket kan upplevas smärtsamt och förorsaka lidande. Att leva med avancerad bröstcancer innebär att livslängden förkortas när sjukdomen blir avancerad. Sjuksköterskans ansvarsområde ligger i att ge en god omvårdnad samt ge stöd och råd. Detta för att kvinnorna ska kunna bearbeta sjukdomen och få sina eventuella frågor besvarade så att de kan känna sig delaktiga i sin vård. / Breast cancer is the most common form of cancer among women around the world, which can be painful and cause suffering. Living with advanced breast cancer means that the life expectancy is shortened as the disease progresses. The nurse's responsibility is to provide good care, support, and advice. For the women to be able to process the disease and get their potential questions answered.

Background: Breast cancer is the second most common cancer in adults and the most frequent cancer diagnosed in women. In South Africa, breast cancer accounts for 38.5% of cancers diagnosed in women. Since the presence, extent and location of distant metastases is one important prognostic factor in locally advanced breast cancer (LABC), accurate staging at diagnosis is crucial to ensure patients receive the appropriate treatment. Increasing evidence shows that the use of 18F-FDG PET/CT for disease staging of LABC may improve diagnostic sensitivity. Aim: To prospectively assess the difference in diagnostic accuracy between whole-body PET/PET-CT and conventional imagine (CI) for staging LABC. Methods: A total of 42 participants with clinical stage III and a select few stage II breast cancer underwent both 18F-FDG PET/CT and CI. Results: 18F-FDG PET/CT found significantly more (p=0.0077) distant metastatic sites than CI (36% vs. 21%). 18F-FDG PET/CT upstaged 9 (21.4%) of patients from clinical stage IIIa to stage IIIc, and changed management of 54% of patients. Thirty-eight percent (38%) of the patients had their clinical stage unchanged. One of 5 suspected metastatic sites 18F FDG PET/CT was positive for malignancy on biopsy. Conclusion: The 18F-FDG PET/CT is useful for staging locally advanced non-inflammatory infiltrating ductal carcinoma of the breast. Use of 18F-FDG PET/CT was superior to conventional imaging in assessing metastatic mediastinal lymphadenopathy, but with a poor specificity. The use of 18F-FDG PET/CT in LABC is useful, with the biopsy of isolated suspicious lesions for metastasis increasing its accuracy.

Determinar o valor prognóstico e preditivo do VEGF (vascular endothelial growth factor) e do HIF-1? (Hypoxia-inducible factor-1) em relação à sobrevida livre de doença (SLD) e sobrevida global (SG) em pacientes com carcinoma de mama localmente avançado (CMLA) tratadas primariamente pela quimioterapia neoadjuvante. MATERIAIS E METODOS: VEGF e HIF foram quantificados consecutivamente em plasma de 36 pacientes com CMLA pelo método de ELISA (enzyme labeling immunoassay absorbant) para o VEGF165 e o HIF-1?. O tratamento neoadjuvante foi realizado em todas as pacientes com docetaxel e epirrubicina. O tempo médio de seguimento foi de 56 meses. RESULTADOS: Uma análise univariada demonstrou que o HIF-1? está significantemente relacionado à SLD (P =.0238) e à SG (P = .0121) com as pacientes HER-2 positivas. Não houve diferença significante para a SLD ou SG no que diz respeito aos receptores de hormônio, comprometimento axilar ou grau tumoral. Os valores de VEGF foram maiores no grupo de pacientes RE+ do que no grupo RE negativo (P =.01). Inversamente os valores de HIF-1? foram menores no grupo RE+ comparados ao grupo RE - (P =.02). Pacientes com recorrência óssea apresentaram uma tendência a apresentarem valores de VEGF menores (media, 175.7 pg/ml) do que aquelas com recorrência visceral (441 pg/ml). Uma análise multivariada demonstrou o comprometimento axilar (P =.0004), receptores de estrógeno (ER) (P < .0001), e tamanho do tumor (P = .0085) como fatores independentes de SLD. O HIF-1? foi tido como um fator independente preditivo de SG (P =.0180). Não houve diferença estatisticamente significante entre os valores plasmáticos de HIF-1? ou VEGF nos períodos pré e pós quimioterapia. CONCLUSÕES: Os resultados sugerem que o nível plasmático do HIF-1? é preditivo de SLD e SG nas pacientes com CMLA apresentando uma sobreposição as pacientes HER-2 positivas. As dosagens de VEGF podem ser preditivas de resposta e prognóstico no tratamento neoadjuvante, mas são necessários novos estudos prospectivos comparados ao HIF-1? para conclusões mais consistentes. / To determine the predictive and prognostic value of vascular endothelial growth factor (VEGF) and Hypoxia-inducible factor-1 (HIF-1?) for relapse-free survival (RFS) and overall survival (OS) in locally advanced breast cancer (LABC) primarily submitted to neoadjuvant chemotherapy. MATERIALS AND METHODS: VEGF and HIF were quantitatively measured in plasma sample from 36 consecutive patients with LABC using an enzyme immunoassay for human VEGF165 and HIF-1?. Neoadjuvant treatment was given to all patients as docetaxel and epirrubicin. The follow-up median time was 56 months. RESULTS: Univariate analysis showed that HIF-1? is a significant predictor of RFS ( P = .0238) and OS (P = 0121) in HER-2 positive patients. No significant difference was seen in RFS or OS related to hormonal receptor, axillary status or tumoral grade. The VEGF level was higher in the group of patients who ER was positive than ER negative (P = .01). On the other hand, the HIF-1? level is higher in ER negative patients than ER positive ( P=.02). Patients with bone recurrences tended to have lower VEGF plasma level (median, 175.7 pg/ml) than patients with visceral metastasis (441 pg/ml). Multivariate analysis showed nodal status (P = .0004), estrogen receptor (ER) status (P < .0001), and tumor size (P = .0085) to be independent predictors of RFS. HIF-1? was found to be an independent predictor of OS (P = .0180). No statistically differences were observed related to pre and post chemotherapy period in HIF-1? or VEGF measurements. CONCLUSION: The results suggest that high level of plasma HIF-1? is associated to HER-2 over expression and they are major predictive factors of RFS and OS in LABC. VEGF content might also predict outcome after neoadjuvant treatment, however further studies in a prospective setting with HIF-1? homologous treatments are required.

Determinar o valor prognóstico e preditivo do VEGF (vascular endothelial growth factor) e do HIF-1? (Hypoxia-inducible factor-1) em relação à sobrevida livre de doença (SLD) e sobrevida global (SG) em pacientes com carcinoma de mama localmente avançado (CMLA) tratadas primariamente pela quimioterapia neoadjuvante. MATERIAIS E METODOS: VEGF e HIF foram quantificados consecutivamente em plasma de 36 pacientes com CMLA pelo método de ELISA (enzyme labeling immunoassay absorbant) para o VEGF165 e o HIF-1?. O tratamento neoadjuvante foi realizado em todas as pacientes com docetaxel e epirrubicina. O tempo médio de seguimento foi de 56 meses. RESULTADOS: Uma análise univariada demonstrou que o HIF-1? está significantemente relacionado à SLD (P =.0238) e à SG (P = .0121) com as pacientes HER-2 positivas. Não houve diferença significante para a SLD ou SG no que diz respeito aos receptores de hormônio, comprometimento axilar ou grau tumoral. Os valores de VEGF foram maiores no grupo de pacientes RE+ do que no grupo RE negativo (P =.01). Inversamente os valores de HIF-1? foram menores no grupo RE+ comparados ao grupo RE - (P =.02). Pacientes com recorrência óssea apresentaram uma tendência a apresentarem valores de VEGF menores (media, 175.7 pg/ml) do que aquelas com recorrência visceral (441 pg/ml). Uma análise multivariada demonstrou o comprometimento axilar (P =.0004), receptores de estrógeno (ER) (P < .0001), e tamanho do tumor (P = .0085) como fatores independentes de SLD. O HIF-1? foi tido como um fator independente preditivo de SG (P =.0180). Não houve diferença estatisticamente significante entre os valores plasmáticos de HIF-1? ou VEGF nos períodos pré e pós quimioterapia. CONCLUSÕES: Os resultados sugerem que o nível plasmático do HIF-1? é preditivo de SLD e SG nas pacientes com CMLA apresentando uma sobreposição as pacientes HER-2 positivas. As dosagens de VEGF podem ser preditivas de resposta e prognóstico no tratamento neoadjuvante, mas são necessários novos estudos prospectivos comparados ao HIF-1? para conclusões mais consistentes. / To determine the predictive and prognostic value of vascular endothelial growth factor (VEGF) and Hypoxia-inducible factor-1 (HIF-1?) for relapse-free survival (RFS) and overall survival (OS) in locally advanced breast cancer (LABC) primarily submitted to neoadjuvant chemotherapy. MATERIALS AND METHODS: VEGF and HIF were quantitatively measured in plasma sample from 36 consecutive patients with LABC using an enzyme immunoassay for human VEGF165 and HIF-1?. Neoadjuvant treatment was given to all patients as docetaxel and epirrubicin. The follow-up median time was 56 months. RESULTS: Univariate analysis showed that HIF-1? is a significant predictor of RFS ( P = .0238) and OS (P = 0121) in HER-2 positive patients. No significant difference was seen in RFS or OS related to hormonal receptor, axillary status or tumoral grade. The VEGF level was higher in the group of patients who ER was positive than ER negative (P = .01). On the other hand, the HIF-1? level is higher in ER negative patients than ER positive ( P=.02). Patients with bone recurrences tended to have lower VEGF plasma level (median, 175.7 pg/ml) than patients with visceral metastasis (441 pg/ml). Multivariate analysis showed nodal status (P = .0004), estrogen receptor (ER) status (P < .0001), and tumor size (P = .0085) to be independent predictors of RFS. HIF-1? was found to be an independent predictor of OS (P = .0180). No statistically differences were observed related to pre and post chemotherapy period in HIF-1? or VEGF measurements. CONCLUSION: The results suggest that high level of plasma HIF-1? is associated to HER-2 over expression and they are major predictive factors of RFS and OS in LABC. VEGF content might also predict outcome after neoadjuvant treatment, however further studies in a prospective setting with HIF-1? homologous treatments are required.

A qualitative research design and an ethno-nursing research method were used to identify cultural factors influencing Xhosa women's health seeking behaviours associated with breast lumps. Focus group interviews were conducted to obtain data. The research results revealed that these Xhosa women with breast lumps did not disclose some cultural factors which influenced their health seeking behaviours associated breast lumps. Registered nurses, sharing the same culture and language as the Xhosa women, revealed that Xhosa women with breast lumps sought treatment from traditional healers, prior to seeking medical care from the hospital and/or clinics. When they arrive at the hospital/clinics the breast lumps have often progressed to advanced ulcerated breast cancer, with poor prognoses and poor treatment outcomes. Xhosa women lacked knowledge about the management of breast lumps. Health promotion efforts should address this issue at Primary Health Care services in the Eastern Cape. / Health Studies / M.A. (Health Studies)

A qualitative research design and an ethno-nursing research method were used to identify cultural factors influencing Xhosa women's health seeking behaviours associated with breast lumps. Focus group interviews were conducted to obtain data. The research results revealed that these Xhosa women with breast lumps did not disclose some cultural factors which influenced their health seeking behaviours associated breast lumps. Registered nurses, sharing the same culture and language as the Xhosa women, revealed that Xhosa women with breast lumps sought treatment from traditional healers, prior to seeking medical care from the hospital and/or clinics. When they arrive at the hospital/clinics the breast lumps have often progressed to advanced ulcerated breast cancer, with poor prognoses and poor treatment outcomes. Xhosa women lacked knowledge about the management of breast lumps. Health promotion efforts should address this issue at Primary Health Care services in the Eastern Cape. / Health Studies / M.A. (Health Studies)