Abstract P1-09-31: Crowdsourcing the collateral damage from breast cancer treatment

Author(s):  
Susan M Love ◽  
Amaka Obidegwu ◽  
Christine A Fischetti
2014 ◽  
Vol 32 (26_suppl) ◽  
pp. 110-110
Author(s):  
Susan M. Love ◽  
Amaka Obidegwu ◽  
Christine A Fischetti

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.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24046-e24046
Author(s):  
Deanna J. Attai ◽  
Leah Eshraghi ◽  
Susan M. Love

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.


2014 ◽  
Vol 24 (9) ◽  
pp. 683 ◽  
Author(s):  
Christine Fischetti ◽  
Amaka Obidegwu ◽  
Susan M. Love

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