Abstract PO-109: “At some point or another, it has affected all of my five senses.”: A qualitative assessment of treatment-related side effects in Black and White breast cancer survivors

208 Background: In The Indian Scenario, a diagnosis of cancer is accompanied with social stigma and emotional upheavals, especially in breast cancer patients. They are typically thinking: “I would be less of a woman,” “I don’t know if people understand me,” “I feel isolated from myself, my family and my friends,” “Would I be normal again?” “Do I know how to help myself?” or “What will happen in the future, to my kids, to my husband?” Methods: All of these concerns are not always addressed by the medical professions. To address these issues, the Indian Breast Cancer Survivors Conference was organized as an annual conference with an attendance of 200-250 breast cancer survivors from the state of Maharashtra, India. The conference would address the psychological, emotional and social distress experienced by the patients with an aim from living a longer life to living a better and fulfilled life. Results: The emphasis of the sessions were educational (with recent updates on the surgical, medical and radiation therapy aspects of breast cancer treatment), practical (emphasized important issues like side-effects of treatment, patient advocacy, complementary therapies, spirituality, lifestyle changes, etc.), and entertaining. The summary and outcomes of the last 5 annual survivorship conferences will be described and enumerated. Results of questionnaires administered during the last 2 conferences and addressing health behavior patterns of survivors will be presented. Conclusions: We can evaluate through post conference support group discussions and conference feedback, qualify patient psychological and social health as 1) Physical:There are side effects but I choose to go on; 2) Mental: There are times that I am low, depressed, anxious, scared, guilty, but this is my new normal; 3) Emotional:Little things upset me, angry quickly but I am dealing with it; 4)Spiritual:Moved away from bargaining with God to accepting, from rituals to spiritual; 5) Social:don’t hesitate to reach out for support and to support; and 5) Intellectual:Knowledge is power, so I have learned to ask, to question, and then to decide. Achieving psychological and social health is the effort of the patient, the treating team and the support group.

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Online discussion of drug side effects and discontinuation among breast cancer survivors

Pharmacoepidemiology and Drug Safety ◽

10.1002/pds.3365 ◽

2013 ◽

Vol 22 (3) ◽

pp. 256-262 ◽

Cited By ~ 75

Author(s):

Jun J. Mao ◽

Annie Chung ◽

Adrian Benton ◽

Shawndra Hill ◽

Lyle Ungar ◽

...

Keyword(s):

Breast Cancer ◽

Side Effects ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Online Discussion ◽

Drug Side Effects

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THE LANDSCAPE OF ONE BREAST: EMPOWERING BREAST CANCER SURVIVORS THROUGH DEVELOPING A TRANSDISCIPLINARY INTERVENTION FRAMEWORK IN A JIANGMEN BREAST CANCER HOSPITAL IN CHINA

Psychological Applications and Trends 2021 ◽

10.36315/2021inpact003 ◽

2021 ◽

Author(s):

Yuk Yee Karen Lee ◽

◽

Kin Yin Li ◽

Keyword(s):

Breast Cancer ◽

Action Research ◽

Side Effects ◽

Cancer Survivors ◽

Gender Stereotypes ◽

Breast Cancer Survivors ◽

Job Market ◽

Treatment Side Effects ◽

Research Findings ◽

The Impact

"Breast cancer is a major concern in women’s health in Mainland China. Literatures demonstrates that women with breast cancer (WBC) need to pay much effort into resisting stigma and the impact of treatment side-effects; they suffer from overwhelming consequences due to bodily disfigurement and all these experiences will be unbeneficial for their mental and sexual health. However, related studies in this area are rare in China. The objectives of this study are 1) To understand WBC’s treatment experiences, 2) To understand what kinds of support should be contained in a transdisciplinary intervention framework (TIP) for Chinese WBC through the lens that is sensitive to gender, societal, cultural and practical experience. In this study, the feminist participatory action research (FPAR) approach containing the four cyclical processes of action research was adopted. WBC’s stories were collected through oral history, group materials such as drawings, theme songs, poetry, handicraft, storytelling, and public speech content; research team members and peer counselors were involved in the development of the model. This study revealed that WBC faces difficulties returning to the job market and discrimination, oppression and gender stereotypes are commonly found in the whole treatment process. WBC suffered from structural stigma, public stigma, and self-stigma. The research findings revealed that forming a critical timeline for intervention is essential, including stage 1: Stage of suspected breast cancer (SS), stage 2: Stage of diagnosis (SD), stage 3: Stage of treatment and prognosis (ST), and stage 4: Stage of rehabilitation and integration (SRI). Risk factors for coping with breast cancer are treatment side effects, changes to body image, fear of being stigmatized both in social networks and the job market, and lack of personal care during hospitalization. Protective factors for coping with breast cancer are the support of health professionals, spouses, and peers with the same experience, enhancing coping strategies, and reduction of symptom distress; all these are crucial to enhance resistance when fighting breast cancer. Benefit finding is crucial for WBC to rebuild their self-respect and identity. Collaboration is essential between 1) Health and medical care, 2) Medical social work, 3) Peer counselor network, and 4) self-help organization to form the TIF for quality care. The research findings are crucial for China Health Bureau to develop medical social services through a lens that is sensitive to gender, societal, cultural, and practical experiences of breast cancer survivors and their families."

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Implementation of a brief screening tool to identify needs of cancer survivors.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e23075 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e23075-e23075 ◽

Cited By ~ 1

Author(s):

Allison L. McDonough ◽

Yvonne Y. Lei ◽

Dana Haggett ◽

Rachel Jimenez ◽

Katherine T. Johnston ◽

...

Keyword(s):

Breast Cancer ◽

Primary Care ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Primary Care Clinic ◽

Qualitative Assessment ◽

Plain Language ◽

Convenience Sample ◽

Care Clinic

e23075 Background: Innovation in health care delivery is needed to improve care for cancer survivors. We report a pragmatic study intended to evaluate our experience with adopting screening guidelines from the National Comprehensive Cancer Network (NCCN) to the routine care of breast cancer survivors in primary care and oncology follow up. Methods: We adapted the NCCN recommended screening questions into a plain language self-administered 1 page intake questionnaire. The tool was administered to a convenience sample of female breast cancer survivors in routine follow-up at an oncology or primary care clinic from September through December 2018. Domains included symptoms, lifestyle concerns, and financial issues. Frequency of concerns was assessed as “never”, “rarely”, “sometimes”, “very frequently” and “always”. We dichotomized results and evaluated feasibility of administration, prevalence of reported symptoms and qualitative assessment of burden as well as utility of the tool among participating clinicians. Results: 165 out of 169 patients offered the questionnaire participated (98%). Office staff provided the questionnaire at routine visits without notable impact on clinic flow. Most commonly endorsed concerns (sometimes or more) were: desire to improve fitness or nutrition (80%), worry about cancer recurrence (72%), and problems with sleep (57%). A majority also reported feeling nervous or worried (55%) and aches or pains in limbs or joints (55%). Several issues known to be underreported in clinic visits were endorsed including lack of satisfaction with sexual function (30% sometimes or more, 12% very often or always) and difficulty remembering things (47% sometimes or more, 13% very often or always). Among 7 participating clinicians, the tool was deemed useful and not burdensome. Several noted that it led to discussing issues that may not otherwise have been addressed. Suggestions included systematically identifying resources and strategies to address common issues and incorporating the tool into the electronic health record to increase utility. Conclusions: Screening for individual needs among survivors is feasible and efficient and may identify prevalent issues that otherwise can be missed in routine survivorship care.

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