It doesn’t make sense, but we do: framing disease in an online metastatic breast cancer support community

Using Weick’s sensemaking as a conceptual framework to investigate online discussions between members of a Facebook group of metastatic breast cancer patients, and using thematic analysis to examine textual threads between group members, this research examines participants’ framing of cancer survivorship. Participants in peer-to-peer disease support groups, which are not led by medical experts, communicate differently among themselves in order to cope with chronic and terminal illness. Perceptions of survivorship of late stage patients versus early stage patients differ for a variety of reasons, with late stage patients understanding their illness trajectory more often as chronic and declining. This analysis identified three properties of sensemaking used by members to manage their disease: identity, retrospective, and enactment. Results indicate that peer-to-peer online support group communication engenders distinct framing logics that members draw upon for group support as they manage a chronic and terminal disease.

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Illness perceptions, quality of life and mood in metastatic breast cancer patients

Annals of Oncology ◽

10.1093/annonc/mdz242.070 ◽

2019 ◽

Vol 30 ◽

pp. v136-v137

Author(s):

I. Domingues ◽

J. Carvalho ◽

E.A. Pratas ◽

S. Pinheiro ◽

S. Amaral ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Metastatic Breast Cancer ◽

Cancer Patients ◽

Illness Perceptions ◽

Metastatic Breast ◽

Breast Cancer Patients

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Can Twitter social media be an effective tool for breast cancer survivor support and education?

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.26_suppl.130 ◽

2014 ◽

Vol 32 (26_suppl) ◽

pp. 130-130

Author(s):

Deanna J. Attai ◽

Jeffrey Landercasper ◽

Jody M Schoger ◽

Alicia C Staley ◽

Michael S Cowher

Keyword(s):

Breast Cancer ◽

Social Media ◽

Metastatic Breast Cancer ◽

Breast Imaging ◽

Survey Methods ◽

Metastatic Breast ◽

The United States ◽

Breast Cancer Patients ◽

Cancer Support ◽

Patient Resources

130 Background: Despite reported benefits, approximately 60% of women do not attend breast cancer support groups. Many online resources for support exist, but information regarding the effects of participation is lacking. We report the results of a Twitter breast cancer support community participant survey. Methods: The Breast Cancer Social Media (#BCSM) Twitter support community began in July 2011. IRB approval with waiver of informed consent was obtained for a de-identified survey which was posted for two weeks on Twitter and on the #BCSM blog and Facebook page. Results: There were 206 respondents, with a median age of 45-54 and 93% being female. 74% were from the United States. 92% were Caucasian. 83% completed a 4-year college degree. 69% had been treated for breast cancer. 14% reported living with metastatic breast cancer. 72% became aware of #BCSM through Twitter. 45% had been participating in the chats for > 12 months. 81% of respondents reported increased overall knowledge about breast cancer. Increased knowledge through #BCSM was reported in all the following specific domains: 86% survivorship, 80% metastatic breast cancer, 70% cancer types and biology, 66% clinical trials and research, 56% treatment options, 56% breast imaging, 54% genetic testing and risk assessment, and 43% radiotherapy. 31% reported that participation led them to seek a second opinion or bring additional information to the attention of their treatment team. 73% percent reported plans to increase their outreach and advocacy efforts as a result of participation. Levels of reported anxiety before and after participation were analyzed. 29 of 43 patients (67%) who initially reported “high or extreme” anxiety reported “low or no” anxiety after participation (p < 0.001). Also, no patients initially reporting “low or no” anxiety prior to participation reported an increase to “high or extreme anxiety” after participation. Conclusions: While many online breast cancer patient resources exist, data documenting patient educational benefits of participation are lacking. This study demonstrates that breast cancer patients’ perceived knowledge can be increased and that their anxiety can be decreased by participation in a Twitter social media support group.

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The EPICURE study: a pilot prospective cohort study of heterogeneous and massive data integration in metastatic breast cancer patients

BMC Cancer ◽

10.1186/s12885-021-08060-8 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Mathilde Colombié ◽

Pascal Jézéquel ◽

Mathieu Rubeaux ◽

Jean-Sébastien Frenel ◽

Frédéric Bigot ◽

...

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Early Stage ◽

Metastatic Breast ◽

Heterogeneous Data ◽

Biological Data ◽

Biological Database ◽

Breast Cancer Patients ◽

Survival Status ◽

Data Investigation

Abstract Background Breast cancer is the most common cancer in women and the first cancer concerning mortality. Metastatic breast cancer remains a disease with a poor prognosis and about 30% of women diagnosed with an early stage will have a secondary progression. Metastatic breast cancer is an incurable disease despite significant therapeutic advances in both supportive cares and targeted specific therapies. In the management of a metastatic patient, each clinician follows a highly complex and strictly personal decision making process. It is based on a number of objective and subjective parameters which guides therapeutic choice in the most individualized or adapted manner. Methods/design The main objective is to integrate massive and heterogeneous data concerning the patient’s environment, personal and familial history, clinical and biological data, imaging, histological results (with multi-omics data), and microbiota analysis. These characteristics are multiple and in dynamic interaction overtime. With the help of mathematical units with biological competences and scientific collaborations, our project is to improve the comprehension of treatment response, based on health clinical and molecular heterogeneous big data investigation. Discussion Our project is to prove feasibility of creation of a clinico-biological database prospectively by collecting epidemiological, socio-economic, clinical, biological, pathological, multi-omic data and to identify characteristics related to the overall survival status before treatment and within 15 years after treatment start from a cohort of 300 patients with a metastatic breast cancer treated in the institution. Trial registration ClinicalTrials.gov identifier (NCT number): NCT03958136. Registration 21st of May, 2019; retrospectively registered.

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Monitoring the progression of metastatic breast cancer on nanoporous silica chips

Philosophical Transactions of The Royal Society A Mathematical Physical and Engineering Sciences ◽

10.1098/rsta.2011.0444 ◽

2012 ◽

Vol 370 (1967) ◽

pp. 2433-2447 ◽

Cited By ~ 23

Author(s):

Jia Fan ◽

Xiaoyong Deng ◽

James W. Gallagher ◽

Haiyu Huang ◽

Yi Huang ◽

...

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Early Stage ◽

Physiological State ◽

Metastatic Breast ◽

Effective Therapy ◽

Nanoporous Silica ◽

Breast Cancer Patients ◽

Tumour Metastasis ◽

Small Proteins

Breast cancer accounted for 15 per cent of total cancer deaths in female patients in 2010. Although significant progress has been made in treating early-stage breast cancer patients, there is still no effective therapy targeting late-stage metastatic breast cancers except for the conventional chemotherapy interventions. Until effective therapy for later-stage cancers emerges, the identification of biomarkers for the early detection of tumour metastasis continues to hold the key to successful management of breast cancer therapy. Our study concentrated on the low molecular weight (LMW) region of the serum protein and the information it contains for identifying biomarkers that could reflect the ongoing physiological state of all tissues. Owing to technical difficulties in harvesting LMW species, studying these proteins/peptides has been challenging until now. In our study, we have recently developed nanoporous chip-based technologies to separate small proteins/peptides from the large proteins in serum. We used nanoporous silica chips, with a highly periodic nanostructure and uniform pore size distribution, to isolate LMW proteins and peptides from the serum of nude mice with MDA-MB-231 human breast cancer lung metastasis. By matrix-assisted laser desorption/ionization time-of-flight mass spectrometry and biostatistical analysis, we were able to identify protein signatures unique to different stages of cancer development. The approach and results reported in this study possess a significant potential for the discovery of proteomic biomarkers that may significantly enhance personalized medicine targeted at metastatic breast cancer.

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Neuregulin Expression Modulates Clinical Response to Trastuzumab in Patients With Metastatic Breast Cancer

Journal of Clinical Oncology ◽

10.1200/jco.2006.08.6850 ◽

2007 ◽

Vol 25 (19) ◽

pp. 2656-2663 ◽

Cited By ~ 45

Author(s):

Enrique de Alava ◽

Alberto Ocaña ◽

Mar Abad ◽

Juan Carlos Montero ◽

Azucena Esparís-Ogando ◽

...

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Early Stage ◽

Metastatic Breast ◽

Breast Cancers ◽

Breast Cancer Patients ◽

Event Free Survival ◽

Mcf7 Cells ◽

Free Survival ◽

Her 2

Purpose Human epidermal growth factor receptor 2 (HER-2) overexpression has been associated with the genesis and progression of a subset of breast cancers. The function of HER-2 may be upregulated by overexpression or by the availability of neuregulins (NRGs), a group of transmembrane growth factors. Transmembrane NRGs strongly activated HER-2 and cell proliferation in breast cancer cells that did not overexpress HER-2, and treatment with trastuzumab prevented the proliferative action of transmembrane NRG. This raised the relevant clinical question of whether patients considered as HER-2 negative, but expressing transmembrane NRG, may benefit from treatment with trastuzumab. Patients and Methods MCF7 cells expressing transmembrane NRG (MCF7-NRGα2c) were injected into mice, and their sensitivity to trastuzumab was assessed. A retrospective study of 124 patients with early-stage or metastatic breast cancer was conducted. Expression of transmembrane NRG was evaluated by immunohistochemistry. In 11 patients, Western blot for NRGs was also carried out. Statistics were performed to analyze possible correlations between NRG expression and response to trastuzumab-based therapies, event-free survival, and overall survival (OS). Results Trastuzumab inhibited tumor growth in mice injected with MCF7-NRGα2c cells. Transmembrane NRG was frequently expressed in breast cancer patients. Overexpression of transmembrane NRG significantly correlated with a longer event-free survival and OS in patients with low or normal HER-2 expression who were treated with trastuzumab-based therapies but not in patients with HER-2 overexpression. Conclusion We suggest that the spectrum of patients who may benefit from trastuzumab-based therapies may be widened to include patients with metastatic breast cancer without HER-2 amplification but who express transmembrane NRGs.

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Cost of Illness of HER2-Positive and Recurrent HER2-Positive Breast Cancer – A Danish Register-Based Study from 2005 to 2016

10.21203/rs.3.rs-907967/v1 ◽

2021 ◽

Author(s):

Maria Spanggaard ◽

Jens Olsen ◽

Kenneth Forsström Jensen ◽

Michael Andersson

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Healthcare Costs ◽

Early Stage ◽

Labour Productivity ◽

Metastatic Breast ◽

Breast Cancer Patients ◽

Her2 Positive ◽

Her2 Positive Breast Cancer ◽

Positive Breast Cancer

Abstract Background: Information and knowledge about cost of illness and labour productivity in patients with HER2-positive early-stage and metastatic breast cancer treated with trastuzumab is limited. The aim of this study was to estimate the direct and indirect costs associated with treatment of HER2-positive breast cancer among patients with early-stage and metastatic breast cancer, treated with trastuzumab, in a 10-year period after diagnosis. Materials and Methods: This study included all Danish HER2-positive breast cancer patients (≥18 years) treated with trastuzumab between 2005 and 2016 identified in the Danish national registers. Among this population, patients experiencing metastatic breast cancer were identified. For the study populations, we estimated total healthcare costs and indirect costs for one year prior to the breast cancer diagnosis and up to 10 years after diagnosis compared with a group of matched controls free of breast cancer.Results: We identified 4,153 HER2-positive breast cancer patients, whereof 27% were identified with metastatic breast cancer. During the follow-up period of 10 years, we estimated excess healthcare costs of EUR 115,000 among the total study population compared to controls; EUR 211,000 among patients with recurrence; and EUR 89,000 among patients without recurrence. Healthcare costs were found to be highest in the first year after diagnosis and also peaked in the year after recurrence. Labour productivity was significantly lower among patients with recurrence 10 years after breast cancer diagnosis compared with controls.Conclusions: In this study, we estimated the direct and indirect cost associated with HER2-positive breast cancer to be significantly increased during the 10 years after diagnosis, specifically among patients experiencing recurrence of breast cancer.

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Abstract P5-13-10: Recommendations to improve the lived experience of early stage and metastatic breast cancer patients in Canada

10.1158/1538-7445.sabcs18-p5-13-10 ◽

2019 ◽

Author(s):

J Gordon ◽

C Ammendolea ◽

N Chari ◽

R Armstrong ◽

W Hall

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Lived Experience ◽

Cancer Patients ◽

Early Stage ◽

Metastatic Breast ◽

Breast Cancer Patients

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Review of Clinical Studies of CA 27.29 in Breast Cancer Management

The International Journal of Biological Markers ◽

10.1177/172460089901400107 ◽

1999 ◽

Vol 14 (1) ◽

pp. 36-39 ◽

Cited By ~ 12

Author(s):

R.A. Beveridge

Keyword(s):

Breast Cancer ◽

Metastatic Breast Cancer ◽

Cancer Patients ◽

Critical Review ◽

Early Stage ◽

Metastatic Breast ◽

Breast Cancer Patients ◽

Review Of The Literature ◽

Cancer Management ◽

Breast Cancer Management

A critical review of CA 27.29 and CA 15-3 is performed in this paper. A review of the literature is undertaken. A review of the FDA submissions for 27.29 for both early stage and monitoring metastatic breast cancer patients is reviewed.

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Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

Catalyst Feminism Theory Technoscience ◽

10.28968/cftt.v4i1.199 ◽

2018 ◽

Vol 4 (1) ◽

pp. 1-24

Author(s):

Susan Jacobson

Keyword(s):

Breast Cancer ◽

Social Media ◽

Metastatic Breast Cancer ◽

Civil Rights ◽

Early Stage ◽

Metastatic Breast ◽

Stage Iv ◽

Breast Cancer Patients ◽

Early Stage Disease ◽

Stage Iv Breast Cancer

Dominant breast cancer narratives equate early detection and screening with “cure,” advocate for “awareness,” and identify women who undergo treatment for early stage disease as “survivors.” Left out of these narratives are the “metavivors”: women and men diagnosed with “incurable” metastatic breast cancer, also known as Stage IV. This article uses case studies to profile four women living with metastatic breast cancer who turn to social media to tell their stories: Sally, a former civil rights attorney turned breast cancer activist, who uses social media platforms to organize and mobilize Stage IV patients to advocate on their own behalf; Jane, who plows through databases of dense medical research to find treatments to save her own life; Jenny, a young mother dying of metastatic breast cancer who shares her experiences on a YouTube channel; and Grace, who participates in an early-stage clinical trial that she believes “cured” her, a term eschewed by both the medical establishment and fellow metavivors.

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