Introduction
The National Cancer Institute (NCI) estimates that Breast Cancer (BC) will be the most common cancer in the U.S. in 2024, anticipating 310,720 new cases to be diagnosed in this year alone; representing 15.5% of all new cancer cases. Although the rate of BC diagnoses is increasing, the rate of death from BC is notably decreasing. In 1992 the NCI observed the BC death rate per 100,000 to be 31.6, in 2022, it was 18.7 (Cancer Statistics - NCI, 2015). These statistics come from the NCI’s Surveillance, Epidemiology, and End Results Program (SEER) report on female breast cancer, which “collects and publishes cancer incidence and survival data from population-based cancer registries that cover approximately 48% of the U.S. population” (Cancer of the Breast (Female) - Cancer Stat Facts, n.d.).
Given the divergent paths of these two statistics, it is apparent that there is a growing number of BC survivors in the United States. NCI’s “Who Gets This Cancer?” demographic report reveals that non-Hispanic white females are most likely to get this disease with a 2017-2021 new case rate of 139.0 per 100,000 persons, compared to the Hispanic female’s new case rate of 101.2, The average new case rate of 129.4 is across all races. Among all females diagnosed with BC, the median age at diagnosis is 63 (Cancer of the Breast (Female) - Cancer Stat Facts, n.d.).
Whether or not a mastectomy is recommended to a BC patient depends on a litany of details specific to each individual’s case. If a mastectomy is recommended, it could be one of several types of mastectomies: Total (unilateral or bilateral), Simple, Single, Skin-Sparing, or Nipple-Sparing (Types of Mastectomy, n.d.). Each year, “more than 100,000 U.S. women undergo some form of mastectomy” (Mastectomy and Double Mastectomy - Brigham and Women’s Hospital, n.d.). According to the Healthcare Cost and Utilization Project Statistical Brief #201: “Between 2005 and 2013, the overall rate of mastectomy increased 21 percent, from 74 to 90 per 100,000 adult women. Additionally, the brief stated that “the rate of hospital-based bilateral mastectomies (inpatient and outpatient combined) tripled, from 10.0 to 29.7 per 100,000 adult women” (Steiner & Barrett, n.d.).
Although mastectomies in the U.S. are becoming more common, surprisingly “less than half of all women who require mastectomy are currently offered breast reconstruction surgery, and fewer than 20% elect to undergo immediate reconstruction (Daniel Liu & Tuesday, 2017). This study aims to determine the most influencing narratives that impact a females’ decision regarding preventative mastectomy breast reconstruction (PMBR). “Women in the U.S. diagnosed with early-stage breast cancer in one breast have been choosing to get a bilateral mastectomy more than ever before,” due to this there is a rapidly expanding community of women facing the life-altering reconstruction decision (Types of Mastectomy, n.d.). This study will engage women diagnosed with any type or stage of BC who have had both their breasts removed, whether prophylactically or due to cancer being present in both breasts. In understanding the influences behind the decision-making process, this study can better improve breast cancer patient education, support, care, and satisfaction.
Although breast reconstructions are more common in 2024, “little is known about the nature of communication received by patients and potential variations that may exist” (Momoh et al., 2019). This study aims to fill gaps in the communication and knowledge of what information BC patients are receiving, digesting, and trusting when considering their reconstruction options and anticipated outcomes. The proposed survey instrument will engage BC survivors who have had bilateral mastectomies and have either chosen to or not to reconstruct. Area of interest is their acceptance of and confidence in the communications from their medical team (oncology, surgeon, radiology), social and traditional media, friends, family, and/or other BC survivors, and internal dialogue.
Literature Review
Legislative Attempts to Impact Access to Post Mastectomy Breast Reconstruction (PMBR)
A pivotal moment for U.S women's access to PMBR came in 1998 with the passing of the Women's Health and Cancer Rights Act of 1998 (WHCRA). This federal law provides protection to patients who choose to have breast reconstruction in connection with a mastectomy. Since the passing of the law in 1998, “many states have passed additional laws requiring health insurance companies to cover breast reconstruction after mastectomy (Paying for Breast Reconstruction Surgery and Revision Procedures, n.d.). With the financial blockade of PMBR removed by legislation, there has been an increased number of women becoming financially able to consider this restorative operation.
Requiring insurance companies to provide coverage that includes PMBR, cleared just one of the hurdles for BC patients considering this surgery. Knowledge of this new insurance coverage had to be disclosed to the patients. Next came “the Breast Cancer Patient Education Act (BCPEA) [which] was signed by President Obama in December 2015, and implemented in October 2016 to inform breast cancer patients about the availability and coverage of breast reconstruction and prostheses” (Daniel Liu & Tuesday, 2017). The U.S. Department of Health and Human Services (HHS) launched the #ChoicetoRebuild campaign in 2016, it was the department's first step towards implementing the BCPEA (FEDERAL | HHS Launches BCPEA Implementation on BRA Day 2016, 2016). Reports on the effectiveness of this social media campaign were unavailable.
In a paper presented at American College of Surgeons Clinical Congress in 2018, it was reported that “the increased awareness of surgical safety as well as improvements in reconstructive options, cosmetic outcomes and patient education have all facilitated increased use of breast reconstruction in patients receiving mastectomy. In the last two decades, the utilization of breast reconstruction has rapidly expanded with some studies demonstrating more than a two-fold increase in PMBR rates (Nayyar et al., 2019). That said, this same paper highlighted the fact that “the majority (76%) of breast cancer patients receiving mastectomy do not undergo breast reconstruction” (Nayyar et al., 2019).
Window of Discovery
Depending on the individual’s precise BC diagnosis, there can be a few days to weeks between the shock of receiving a BC diagnosis and the deadline to make the consequential decision regarding a mastectomy and PMBR. During this same period, the woman is likely learning about proposed cancer treatment regiments, financial requirements, and her anticipated survival rate. Understandably, the patient can be fixated more on the goal of surviving her BC than the downstream effects of a bilateral mastectomy or the reconstruction considerations. It is during this tumultuous time that it benefits the woman to make her decision regarding breast reconstruction, whether it will happen immediately after the mastectomy, at some point in the future, or never.
The various narratives that a BC patient encounters during this brief period, paired with any prior knowledge of breast reconstruction influence the decision that will affect her physically, mentally, and emotionally for the rest of her life. For this reason, it is paramount that the voices she encounters be as accurate and informative as possible.
BC Survivors’ Quality of Life
Now that more women are surviving their BC diagnoses, treatment regimes, and cancer-removal surgeries, it is time to focus on survivors’ quality-of-life issues. Findings from a study led by Dr. Laura Dominici, M.D., at Dana-Farber Brigham Cancer Center determined that “women who had one or both breasts surgically removed (a unilateral or bilateral mastectomy) had lower scores on a quality-of-life survey, indicating worse quality of life, than women who had surgery to remove just the tumor and some nearby healthy tissue (breast-conserving surgery)” (Breast Cancer Surgery’s Impact on Quality of Life - NCI, 2021). Several of Dr. Dominici’s findings reinforce the gravity of both the mastectomy and reconstruction surgery decisions that must be made by BC patients. She shared that, “It’s important for us to be able to tell patients that they are potentially going to have a poorer quality of life if they choose a mastectomy, and particularly if they get post-mastectomy radiation,” (Breast Cancer Surgery’s Impact on Quality of Life - NCI, 2021). When discussing the study’s findings, Dr. Tonorezos, director of NCI’s Office of Cancer Survivorship warned that “the researchers [did not] know why participants chose one treatment over another” (Breast Cancer Surgery’s Impact on Quality of Life - NCI, 2021).
Influencing Narratives
HealthCare Providers
Patients traditionally look to their health care providers first for guidance in making specialized, optional, significant, medical decisions. One would assume that BC patients who have identical diagnosis parameters would receive the same advice from their healthcare providers: however, a study published in the National Institutes of Health observed disparities in the likelihood of reconstruction and concluded that “the greatest predictor of reconstruction was medical record documentation of a discussion about reconstruction” (Greenberg et al., 2008).
Furthermore, the study warned that “the etiology of these variations is not understood and admitted that [they] investigated whether these differences reflect variations in the rate or qualitative aspects of the provider’s discussion of reconstruction as an option” (Greenberg et al., 2008). Key motivation for this proposed study is the valid concern that there are massive variations in the frequency and quality of PMBR guidance from the U.S. BC care teams. Further quantitative research is needed to decrease BC patient knowledge deficits and improve BC patient’s understanding of their options for reconstruction and reasonably-anticipated outcomes.
Social Media
Social Media’s influence regarding breast reconstruction is documented in the study, Breast Reconstruction in the Social Media Age. This study reports that 95% of patients have used the internet for breast reconstruction information. The information was found to be easy to understand by 70% of patients, helpful by 76%, and trustworthy by 60%.” (Nguyen et al., 2021). However, the study concluded that healthcare providers remain as patients’ main source of information, and therefore must direct patients to high-quality and accessible resources.
Online Media
Another study in the Journal of Surgical Oncology looked into the “quality of online information available to support patients facing a decision for breast surgery” (Quality of Online Information to Support Patient Decision‐Making in Breast Cancer Surgery - Bruce - 2015 - Journal of Surgical Oncology - Wiley Online Library, n.d.). This study concluded that despite the numerous breast cancer-related websites existing, the majority are bad at providing women with essential information necessary for a decision on breast cancer surgery.
Family and/or Friends
Although family and friends are highly invested in their loved one’s survival, they are at best woefully under informed and can be highly biased due to anecdotal conversations with other BC survivors. Unsolicited advice from well-meaning people often cascades over a newly diagnosed BC patient.
Internal Dialogue
From the moment of diagnosis to the appointed decision deadline, women analyze the value of the information they have absorbed since becoming a BC patient.
This study aims to mine distinct decision motivators by answering these questions:
RQ1: How does information received from healthcare providers, social media, online media, combined with dialogue with family/friends and self-influence a BC patient's decision to have breast reconstruction or no reconstruction?
RQ2: What information are BC patients receiving from healthcare providers, social media and online media? What is the dialogue with family, friends and self? How do they weigh what they are receiving to make the decision to have breast construction or to not reconstruct?
Methodology
To answer the proposed questions, an electronic questionnaire will be used to study how BC patients received information on options, and the psychological impact that determines the decision to reconstruct or not. Information received is categorized by medical team, social and traditional media. Narrative sources include friends, family and self. “Medical research questionnaires or surveys are vital tools used to gather information on individual perspectives in a large cohort” (Jones, 2013). An online questionnaire is the most effective form for acquiring sensitive information and ensuring autonomy. When there is autonomy, respondents will feel comfortable answering questions about their health honestly; it is crucial for this methodology to be effective. Many BC patients, who have had bilateral mastectomies needed for accurate data. With an online questionnaire, a high number of patients will be reached for qualitative and quantitative data in a cost-effective way. Questionnaire responses will also be attained quicker than it would through mail, allowing for quicker determination of communication and information received that led to the BC patient's decision to reconstruct or not.
Participant Recruitment
Participants profile for the online questionnaire are female BC patients in the U.S who have had bilateral mastectomies, and either chosen to reconstruct or not to reconstruct. The online questionnaire created with Qualtrics will be distributed through social media platforms such as Facebook, Instagram, and Twitter so that we can better target breast cancer support groups and communities. Online the survey will be distributed through breast cancer forums where women discuss experiences and share support or advice. The Susan G. Komen Breast Cancer Foundation will attach the questionnaire to their blog and newsletter to recruit participants. To further entice participants to do the online questionnaire there will be an incentive; each participant will be given a $25 Visa Gift at the end of the survey. The ideal sample size is 300-500 participants to ensure accuracy in data.
Study Design
Questionnaire participants will be asked 23 questions (Appendix A). To determine the demographics of the BC patient respondents, classification questions will be asked at the end of the online questionnaire. Classification questions will include age, ethnicity, geographic location, and occupation. With the heavy nature of this particular study, it is important to have classification questions at the beginning to break the ice. Also, with the nature of the study participants will also initially be asked questions about their cancer stage diagnosis, treatment history and decision to undergo reconstructive survey or not. It was determined best to ask about the decision, therefore if the participant decides to end the survey before completing there will be that data to better support the analysis. The BC patients (independent variables) will be analyzed against their answers (dependent variables). Questions focus on the different narratives given by different sources and the physiological, physical and emotional impact caused from them. In understanding the decision-making process and seeing the confidence and support before and after that decision, we can better determine how these influential sources affect a patient. Narrative sources include healthcare practitioners, social media, online media and then family, friends and self.
Execution and Analyzation
This online questionnaire aims to measure whether information was received from medical teams, social and traditional media, and dialogue with family, friends and self-impacted the BC patient psychologically to make the decision to reconstruct or not. This survey will gather qualitative and quantitative data to determine influences in the decision-making process to better improve breast cancer patient education, support, care and satisfaction. The survey will consist of classification questions, multiple-choice, ranking, Likert scale and open-ended questions. Classification questions are essential to accuracy in the data, therefore are asked in the beginning. Multiple-choice questions will allow for respondents to choose which they reside with best, and for certain, such as “how did you learn about reconstruction options,” multiple selection allowed. Ranking questions look more closely into the psychological and emotional implications of information and influences, as well as of outcomes; these questions have a ranking of 1-5). The Likert scale questions aim to dive more into the communication given to patients and how well it was given, received and the perspectives of others and self. Open-ended questions allow for further discussion and explanation to yes or no questions to give the data some background for better analysis.
Through the questionnaire, we aim to analyze the qualitative and quantitative data in the online questionnaire to determine how information received from healthcare providers, social media and online media, as well as dialogue with family, friends and self-influence a BC patient's decision to have breast reconstruction or to not reconstruct. In understanding the influences in the decision-making process, we aim to improve breast cancer patient education, support, care and satisfaction.
Expected Outcomes
The expected results after collecting survey responses will conclude that medical expertise from healthcare providers are the most influential factors for BC patients when deciding to reconstruct or not. These healthcare providers are trusted due to their experience and knowledge in survival, recovery, and psychological well-being through medical and emotional care. The valuable information healthcare providers share builds confidence in the decision made and leads to a higher quality of life. Social media and family help reinforce the guidance and advice given by healthcare providers, which gives BC patients emotional support during this difficult and stressful time. Self-dialogue also plays a crucial role in empowering women to be proud of their choice to reconstruct or not. Self-dialogue involves view of body image and identity, fear of recurrence or desire to empower themselves, and emotional well-being. The conversations had with oneself involving these reflections will determine the decision made. More recently, social media and online media have become increasingly used for self-research on BC patient options. Social and online media offer BC patients with real-life stories, community support, advocacy and alternative perspective to help narrow the decision on reconstructing or not. Friends and family are also more likely to take to social and online media for knowledge and guidance on how to best support the patient during this difficult time to provide them with meaningful conversations to help ensure them of the decision. It is important to remember that as friends and family, personal opinions should not be addressed to the patient. The decision is a personal preference that must be made by oneself for full confidence and acceptance. BC patients feel more reassured and confident when they receive support, care and love from friends and family after sharing their decision and after the implications.
Practical Recommendations and Implication
With the findings from this study, it is recommended that healthcare practitioners ensure they are staying current on medical advancements and best practices to communicate reconstruction options, long-term implications, maintenance, complications, and risks of reconstructing and deciding to not reconstruct. It is important for healthcare practitioners, friends and family to be respectful and consider factors such as age, socioeconomic status, stage of cancer, current psychological health and cultural beliefs that will sway BC patients’ ultimate decision to reconstruct or not. Older women were determined to typically not reconstruct, “Morrow et al. found that the single most important determining factor as to whether a surgeon offered breast reconstruction was that age was ˃50 years” (Hamnett, 2016). This statistic proves that healthcare practitioners should continue to provide information on both options to patients despite the age, because the median age of BC diagnosis is 63. BC patients deserve to be aware of both possibilities to come to the best conclusion on if they should reconstruct or not. Additionally, since 2000 there has been a rise in sexually transmitted diseases in the elderly population, meaning self-image is becoming a bigger importance within this age group. “Many people choose not to have breast reconstruction after a mastectomy. Instead, they wear a breast form (prosthesis) inside a special bra. They may also choose to “go flat” and not wear prosthetic breasts” (Cleveland Clinic, 2021). When BC patients are given information on options for if they elect to not reconstruct will help improve quality of life afterwards and keep their confidence high.
Limitations and Opportunities for Future Research
The decision to undergo breast reconstruction after mastectomy is a personal preference that has heavy influence from medical, psychological, emotional, social and cultural factors. It is crucial for family, friends and healthcare practitioners to understand the influence of these factors and how they affect the decision-making process. This personal decision must be respectful and supportive of the BC patient to feel at ease and confident with their choice, due to its future implications on the patient. Not every BC patient is the same, even if the diagnosis is. Therefore, there are limitations in the qualitative and quantitative data accumulated, because it is ultimately the individual's decision if they want to follow advice given to them from healthcare practitioners, online and social media, and dialogue with friends, family and self. These extra influences can be further researched to determine how healthcare practitioners can better communicate options to their BC patients to improve the decision-making process. In researching other influences patient care can becomes more personalized for individuals to help them feel more at ease and taken care of by knowledgeable professionals.
Discussion
In analyzing the results of this research, there will be positive implications on the psychosocial well-being of BC patients, physical recovery, quality of life, healthcare access, support systems, survivorship, personalized treatment, and care plans. Women who undergo radical mastectomies are typically given a short window before having to make the life-changing decision to reconstruct or not. The research findings will improve BC patient education, support, care and satisfaction. This research sheds light on the importance of communication, especially for the main influencer (healthcare practitioners) to effectively communicate to patients to help them weigh the pros and cons of each option. Each option will directly impact health, cancer recurrence risk and emotional well-being, especially afterwards. BC patients deserve to make informed decisions, especially during a time where they are overwhelmed and given too short a period to process what is happening to their bodies. Personalized care helps these BC patients feel that everything is under control and going to help them live a satisfied life, and not let BC hurt their mental health. Better communication from healthcare practitioners will improve patient care and keep confidence in these patients that are going through a scary and difficult time, even more so if they are alone in it. This study will advance the healthcare system for the better and make patients proud that they made an informed decision that reflects their values and priorities, while also going to improve their life quality, body image and mental health.
Appendix A
Survey Questions
Age: ____
Ethnicity:
African American
Hispanic/Latino
White
Asian
Pacific Islander
Native American/Alaska Native
Other _____
Geographic location:
Northeast
Southeast
Midwest
Southwest
Other _____
Occupation: _____
Cancer stage diagnosis: _____
Treatment history: _____
Did you choose to undergo breast reconstruction?
Yes
No
How much time were you given between diagnosis and decision? ______
How did you learn about breast cancer reconstruction options? Select all that apply
Healthcare practitioners
Social media
Online media
Family
Friends
Other ________
Rate the influence of each source in your decision-making? (1 being not influential at all and 5 being very influential) Health care practitioners
1, 2, 3, 4, 5
Social media 1-5
1, 2, 3, 4, 5
Online media (articles, blogs, etc.)
1, 2, 3, 4, 5
Family
1, 2, 3, 4, 5
Friends
1, 2, 3, 4, 5
How would you rate the information received from each source? (1 being not credible and 5 being very credible) ExplainHealthcare practitioner
1, 2, 3, 4, 5, N/A
Social media
1, 2, 3, 4, 5, N/A
Online media (articles, blogs, etc.)
1, 2, 3, 4, 5, N/A
Family
1, 2, 3, 4, 5, N/A
Friends
1, 2, 3, 4, 5, N/A
To what extent did discussions with family, friends and self help shape your understanding of breast cancer reconstruction options? (1 being not at all and 5 being a great deal)Family
1, 2, 3, 4, 5
Friends
1, 2, 3, 4, 5
Self
1, 2, 3, 4, 5
If applicable how did social media discussions or experiences shared by others influence your decision about reconstruction _______________
Did the support and opinions from family help you feel more confident in your decision regarding to reconstruct or not?
Yes _____
No _______
Did you encounter contradictory information/ dialogue between sources? If so, explain
Yes _____
No
After receiving information, how confident were you with your decision to reconstruct or not? (1 being not confident and 5 being very confident)
1, 2, 3, 4, 5
Did information from one source change your perspective based on what you heard/read from another source? If so, explain
Yes ______
No
Which of these factors helped influence your decision to reconstruct?
Physical appearance
Emotional well-being
Medical advice
Personal preference
Other _____
Which of these factors helped influence your decision to not reconstruct?
Concern about surgery risks
Financial concerns
Emotional well-being
Medical advice
Personal preference
Other _____
How did your decision to reconstruct or not reconstruct affect your self-esteem and body image? Explain
Positive __________
Negative _________
How did your decision to reconstruct or not impact your emotional well-being?
Positive ____
Negative ____
Were there any specific topics/information you wish had been better covered with you?
Yes ________
No
Looking back, how satisfied are you with your decision to reconstruct or not? (1 being not satisfied and 5 being satisfied)
1, 2, 3, 4, 5
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