Crowdsourcing the collateral damage from breast cancer treatment.

110 Background: Survivorship research focuses on quality of life after cancer treatment, but is usually initiated by providers and lacks the voice of the patient. In an effort to explore the patient perspective, we convened a collaboration of advocacy groups to “crowdsource” women’s questions regarding collateral damage from breast cancer treatment. These concerns will be incorporated into the Health of Women [HOW] Study, an ongoing, online cohort study open to anyone aged 18 or older. Methods: Emails to current HOW participants were sent out July 2013 to solicit questions. In October 2013, a new webpage was designed to collect responses; we then partnered with other advocacy organizations and began collecting responses, which were then categorized to guide questionnaire development. Results: Sixteen advocacy organizations came together to support this project. Emails to current HOW participants resulted in 1,191 responses. The website landing page resulted in 5,099 responses. Overall, 16.8% of respondents complained of fatigue, 16.3% of memory problems, 15.7% of anxiety and/or depression, and 14.0% of numbness/neuropathy. Other less frequently reported problems included problems with nail growth, vision, hearing, urinary tract infections, and allergy-like symptoms. Conclusions: We received an overwhelming number of responses about collateral damage. Many of the issues are known side effects, while others are less commonly reported. We will next compare responses to previously validated questionnaires, develop a comprehensive collateral damage questionnaire for inclusion in the HOW Study, and generate a report for publication to be distributed to participants and the medical community.

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From Provision of Information, Through Activation, to Changing the Social World. The Amazonki Associations as a Source of Comprehensive Support for Women with Breast Cancer

Nauki o Wychowaniu Studia Interdyscyplinarne ◽

10.18778/2450-4491.09.05 ◽

2019 ◽

Vol 9 (2) ◽

pp. 56-72

Author(s):

Edyta Zierkiewicz

Keyword(s):

Breast Cancer ◽

Cancer Treatment ◽

Social World ◽

Breast Cancer Treatment ◽

Women Patients ◽

Mutual Help ◽

The Social ◽

After Cancer ◽

Social Units

This work presents the phenomenon of mutual help and social support in a group of patients with breast cancer, against the background of transformations of the whole Amazonki (Amazons) movement. Social organizations embracing women after breast cancer treatment have been operating in Poland for over 30 years. In that time, they have proven their usefulness and importance. Since the beginning of their existence, the Amazons clubs were oriented to providing support, widely understood, to women patients in oncological wards and club members; they have been successful in that area so far. What is important is the fact that individual clubs of women after cancer treatment are not separate social units, but form a federation which, since the early 1990s, has been directing the process of rationalizing their operations. This work describes that process in general and presents the stage at which the Amazons movement is at present. What is interesting, the stagnation which has overcome the whole movement seems to have little or no effect at all on the functioning of separate associations, which pursue their statutory goal to support sick women in recovery and improve their quality of life.

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Neuropathic pain after breast cancer treatment and its impact on sleep quality one year after cancer diagnosis

The Breast ◽

10.1016/j.breast.2017.03.013 ◽

2017 ◽

Vol 33 ◽

pp. 125-131 ◽

Cited By ~ 4

Author(s):

Filipa Fontes ◽

Marta Gonçalves ◽

Susana Pereira ◽

Nuno Lunet

Keyword(s):

Breast Cancer ◽

Neuropathic Pain ◽

Sleep Quality ◽

Cancer Treatment ◽

Cancer Diagnosis ◽

Breast Cancer Treatment ◽

One Year ◽

After Cancer

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Physical activity and cognitive changes in younger women after breast cancer treatment

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-001876 ◽

2019 ◽

Vol 10 (1) ◽

pp. 122-125

Author(s):

Melissa Arneil ◽

Debra Anderson ◽

Kimberly Alexander ◽

Alexandra McCarthy

Keyword(s):

Breast Cancer ◽

Physical Activity ◽

Cognitive Function ◽

Cancer Treatment ◽

Breast Cancer Treatment ◽

Younger Women ◽

Previously Treated ◽

After Cancer ◽

Cognitive Alterations ◽

Over Time

ObjectivesStudies indicate women aged 25–49 years previously treated for cancer report cognitive alterations. Good evidence indicates physical activity can be beneficial after cancer and might additionally benefit cognitive function. This short report presents data from a substudy of the Younger Women’s Wellness after Cancer Program (YWWACP), which explored cognitive alterations and investigated potential associations between physical activity and cognitive function in participants in the YWWACP. The primary aim of this substudy was to determine in younger women previously treated for breast cancer (1) whether subjectively reported cognitive function changed over time and (2) if physical activity is associated with subjectively reported cognitive function, and if time had an impact on this.MethodsAll participants had completed breast cancer treatment. Data were collected at baseline (n=41) and at 12 weeks. Measures assessed demographics, self-reported physical activity, cognitive function, sleep quality, stress, anxiety and depression using validated and reliable, subjectively reported instruments.ResultsCognitive function and physical activity scores increased across the time points, with cognitive function revealing a statistically significant increase over time (p=0.004). Statistical testing revealed that physical activity was not correlated with cognitive function and that change in physical activity was not correlated with change in cognitive function.ConclusionThese data provide early evidence that cognitive function and physical activity improved over time in this sample. However, interpretations of a correlation between physical activity and cognitive function should be made with caution, and future research would benefit from larger samples.

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An online pilot survey to assess collateral damage related to male breast cancer treatment.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e24046 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e24046-e24046

Author(s):

Deanna J. Attai ◽

Leah Eshraghi ◽

Susan M. Love

Keyword(s):

Breast Cancer ◽

Cancer Treatment ◽

Male Breast Cancer ◽

Late Effects ◽

Breast Cancer Treatment ◽

Male Breast ◽

Fear Of Recurrence ◽

Free Text ◽

Collateral Damage ◽

Pilot Survey

e24046 Background: Fewer than 1% of all cases of breast cancer occur in men, and little is known about the late effects of the disease and its treatment in this population. We developed a pilot survey with the aim of identifying primary areas of concern among men who have been treated for breast cancer. The findings will be used to develop a more comprehensive survey assessing the late effects or collateral damage of male breast cancer treatment. Methods: An anonymous survey was developed with the assistance of patient advocates from the Male Breast Cancer Coalition (MBCC). The survey asked for the men’s current age and contained five open-ended questions. Respondents were asked to (1) describe the most significant types of collateral damage they had experienced; (2) share the effects of disease and treatment on areas of their lives (physical, emotional, psychological, financial); (3) identify resources they had found to be helpful; and (4) provide advice to other men with breast cancer. The fifth question allowed for additional free-text entry. The survey, distributed by the Dr. Susan Love Foundation for Breast Cancer Research and MBCC via social media postings and email, was open from January to February 2021. Results: Sixty-eight men responded to the survey. Mean age of respondents was 62.9 (range 34 - 87). Sexual dysfunction, peripheral neuropathy, musculoskeletal complaints, and fatigue were the most commonly reported collateral damage symptoms. In their open-ended answers, many respondents expressed anxiety about and fear of recurrence, being self-conscious regarding their appearance, and negative effects on sexual function and intimacy. Some described the social isolation of being a man with breast cancer, and several discussed job loss and financial hardship as a result of their diagnosis and treatment. Online resources, including MBCC, were popular sources of support, as were family, friends, and faith. The respondents’ advice to other men with breast cancer included many recommendations to “be your own advocate,” seek out others for support and networking, and “prepare for a pink world.” Conclusions: This pilot study provides important preliminary information regarding late effects and collateral damage of male breast cancer and its treatments, as well as insights into the male breast cancer experience not captured in prior work. This information will be used to inform a more comprehensive project that assesses collateral damage and quality of life among men who have been treated for breast cancer. The findings also will be used to develop recommendations on how to educate clinicians about the needs of male breast cancer survivors and how to better alleviate the late effects and collateral damage they experience.

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