Taking control of cancer: Women’s choice for mastectomy.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 11-11
Author(s):  
Andrea Marie Covelli ◽  
Nancy Baxter ◽  
Margaret Fitch ◽  
Frances Catriona Wright
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Qualitative Interviews ◽  
Contralateral Prophylactic Mastectomy ◽  
Active Role ◽  
Breast Conserving Surgery ◽  
Fear Of Recurrence ◽  
Extensive Surgery

11 Background: Rates of both unilateral (UM) and contralateral prophylactic mastectomy (CPM) for early stage breast cancer (ESBC) have been increasing since 2003. Studies suggest that the increase is due to women playing an active role in decision-making. We do not know what factors are influencing the choice for more extensive surgery. Methods: To identify these factors we completed a multi-method study; conducting a systematic review of quantitative literature and qualitative interviews. Decision-making literature was identified from 5 databases and underwent thematic analysis. Purposive sampling identified women across the Toronto Area (Ontario, Canada), who were suitable candidates for breast conserving surgery (BCS) but underwent UM or CPM. Data saturation was achieved after 29 in-person interviews. Constant comparative analysis identified key concepts and themes. Results: ‘Taking control of cancer’ was the dominant theme. Literature illustrated that patients markedly overestimate risk of local recurrence, contralateral cancer and particularly, mortality. Similarly, interviews revealed that fear of breast cancer was expressed at diagnosis and drives the decision-making process. Despite surgeons discussing survival equivalence of BCS and UM, patients chose UM due to fear of recurrence and an overestimated survival advantage. Similarly, patients chose CPM to eliminate contralateral cancer and a misperceived survival benefit. Women were actively trying to Control Outcomes, as more surgery was believed to offer greater survival and therefore greater control. Conclusions: Both the literature and our interviews have illustrated that women seek UM and CPM for treatment of their ESBC to manage their fear of cancer mortality by undergoing more extensive surgery; this in turn drives mastectomy rates. It is important to understand this process so that we may improve our ability to communicate issues of importance to women and facilitate informed decision-making.

Taking control of cancer: Why women are choosing mastectomy.

2013 ◽  
Vol 31 (26_suppl) ◽  
pp. 108-108
Author(s):  
Andrea Marie Covelli ◽  
Nancy N. Baxter ◽  
Margaret Fitch ◽  
Frances Catriona Wright
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Survival Advantage ◽  
Early Stage Breast Cancer ◽  
Fear Of Recurrence ◽  
Cancer Center ◽  
Structured Interviews ◽  
Extensive Surgery

108 Background: Rates of both unilateral (UM) and contralateral prophylactic mastectomy (CPM) for early stage breast cancer (ESBC) have been increasing since 2003. More extensive surgery is not a benign procedure without the risk of complications. Studies suggest that the increase is due to women choosing UM and CPM; we do not know what factors are influencing the choice for more extensive surgery. Methods: We conducted a qualitative study using grounded theory to identify factors for the choice of mastectomy. Purposive sampling was used to identify women across the Toronto Area (Ontario, Canada), who were suitable candidates for breast conserving surgery (BCS) but underwent UM or CPM. Data were collected through semi-structured interviews. Constant comparative analysis identified key concepts and themes. Results: Data saturation was achieved after 29 in-person interviews. 12 interviewees were treated at academic cancer centers, 6 at an academic non-cancer center and 11 at community centers. 15 women underwent UM; 14 underwent UM+CPM. Median age was 55. ‘Taking control of cancer’ was the dominant theme. Fear of breast cancerwas expressed at diagnosisand remains throughout decision making. Fear translates into the overestimated risk of local recurrenceand contralateral cancer. Despite discussion of the equivalence of BCS and UM, patients chose UM due to fear of recurrence and misperceived survival advantage. Similarly, patients chose CPM to eliminate the risk of contralateral cancer and misperceived survival advantage. Women were actively trying to Control Outcomes, as more surgery was seen as greater control. Conclusions: Women seeking UM and CPM for treatment of their early stage breast cancer manage their fear of cancer by undergoing more extensive surgery which in turn drives mastectomy rates. It is important to understand this process so that we may improve our ability to discuss issues of importance to women and facilitate informed decision-making.

scholarly journals Local Therapy Decision-Making and Contralateral Prophylactic Mastectomy in Young Women with Early-Stage Breast Cancer

2015 ◽  
Vol 22 (12) ◽  
pp. 3809-3815 ◽  
Author(s):  
Shoshana M. Rosenberg ◽  
Karen Sepucha ◽  
Kathryn J. Ruddy ◽  
Rulla M. Tamimi ◽  
Shari Gelber ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Young Women ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Local Therapy ◽  
Contralateral Prophylactic Mastectomy ◽  
Early Stage Breast Cancer ◽  
Therapy Decision

Contralateral prophylactic mastectomy decision-making in the population-based iCanCare study of early-stage breast cancer patients.

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 177-177
Author(s):  
Reshma Jagsi ◽  
Sarah T. Hawley ◽  
Kent A. Griffith ◽  
Nancy K. Janz ◽  
Allison W. Kurian ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Family History ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Multivariable Analysis ◽  
Contralateral Prophylactic Mastectomy ◽  
Population Based ◽  
Early Stage Breast Cancer ◽  
Increased Risk

177 Background: Contralateral prophylactic mastectomy (CPM) use is increasing in women who are not at increased risk of contralateral cancer development and will experience no survival benefit from the more morbid procedure. Little is known about treatment decision-making or provider interactions. Methods: We surveyed a weighted random sample of newly diagnosed patients with early-stage breast cancer who were treated in 2013-14, identified through the population-based SEER registries of Los Angeles and Georgia about 3 months after surgical treatment, and merged with SEER data (N=2632, RR=70%), to determine receipt of diagnostic tests and factors related to the decision about surgery (including knowledge and perceived physician recommendation). Results: Nearly half of 2,436 respondents with unilateral non-metastatic cancer considered CPM (25% strongly). Only 37% of those who considered CPM knew that it does not improve survival for all women with breast cancer (24% believed it does, 39% didn’t know). Among women receiving CPM, 37% believed it generally improves survival. Ultimately, 1,464 (60%) received BCS and 972 (40%) mastectomy (of whom 438, or 18% overall, received CPM). On multivariable analysis, pts who received CPM were younger, more likely to be white, and more likely to have a family history, private rather than Medicaid insurance, and received MRI. Even among pts without a deleterious genetic mutation or family history in multiple relatives (2,303), 400 (17%) received CPM. CPM was uncommon among pts who reported that their surgeons recommended against it (2.0% [17/832]) but much higher among those who reported no surgeon recommendation regarding CPM (21.3% [229/1,077]), and among those who perceived their surgeons to have recommended it (55.4% [147/265]). Conclusions: Many patients consider CPM, but knowledge is low. Use of CPM is substantial among patients without clinical indications but is low when patients report their surgeon recommended against it. In the context of shared decision-making, surgeon recommendations against CPM might help reduce potential overtreatment.

Treatment Decision Making in Early-Stage Breast Cancer: Should Surgeons Match Patients’ Desired Level of Involvement?

2002 ◽  
Vol 20 (6) ◽  
pp. 1473-1479 ◽  
Author(s):  
Nancy L. Keating ◽  
Edward Guadagnoli ◽  
Mary Beth Landrum ◽  
Catherine Borbas ◽  
Jane C. Weeks
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Early Stage ◽  
Treatment Decision ◽  
Active Role ◽  
Breast Conserving Surgery ◽  
Treatment Choice ◽  
Early Stage Breast Cancer ◽  
Treatment Decision Making ◽  
Actual Role

PURPOSE: To describe desired and actual roles in treatment decision making among patients with early-stage breast cancer, identify how often patients’ actual roles matched their desired roles, and examine whether matching of actual and desired roles was associated with type of treatment received and satisfaction. PATIENTS AND METHODS: We surveyed 1,081 women (response, 70%) diagnosed with early-stage breast cancer in Massachusetts or Minnesota about their desired and actual roles in treatment decision making with their surgeon and used logistic regression to assess whether matching of actual to desired roles was associated with type of surgery and satisfaction. RESULTS: Most patients (64%) desired a collaborative role in decision making, but only 33% reported actually having such a collaborative role when they discussed treatments with their surgeons. Overall, 49% of women reported an actual role that matched the desired role they reported, 25% had a less active role than desired, and 26% had a more active role than desired. In adjusted analyses, patients whose reported actual role matched their desired role were no more likely than others to undergo breast-conserving surgery (P > .2), but these women were more satisfied with their treatment choice (83.5% very satisfied; reference) than those whose role was less active than desired (72.9% very satisfied; P = .02) or more active than desired (72.2% very satisfied; P = .005). CONCLUSION: Only approximately half of patients reported an actual role in decision making that matched the desired role they reported. These patients were more satisfied with their treatment choice than other patients, suggesting that women with early-stage breast cancer may benefit from surgeons’ efforts to identify their preferences for participation in decisions and tailor the decision-making process to them.

Taking control of cancer: Why women are choosing mastectomy.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9571-9571
Author(s):  
Andrea Marie Covelli ◽  
Nancy N. Baxter ◽  
Margaret Fitch ◽  
Frances Catriona Wright
Keyword(s):  
Breast Cancer ◽  
Early Stage ◽  
Survival Rates ◽  
Active Role ◽  
Breast Conserving Surgery ◽  
Early Stage Breast Cancer ◽  
Fear Of Recurrence ◽  
Bilateral Mastectomy ◽  
Sources Of Information ◽  
Structured Interviews

9571 Background: Rates of both unilateral (UM) and bilateral mastectomy (BM) for early stage breast cancer (ESBC) have been increasing since 2003. Studies suggest that this is due to women playing a more active role in their decision making, however they do not describe why women are choosing this option. Methods: We conducted a qualitative study using grounded theory to identify factors influential in women’s choice for mastectomy. Purposive sampling was used to identify women across the Greater Toronto Area (Ontario, Canada), who were suitable candidates for breast conserving surgery (BCS) but underwent UM or BM. Data were collected through semi-structured interviews. Constant comparative analysis identified key ideas and themes. Results: Data saturation was achieved after 29 in-person interviews. 12 interviewees were treated at academic cancer centres, 6 at an academic non-cancer centre and 11 at community centres. 15 women underwent UM; 14 underwent BM. Median age was 55. ‘Taking control of cancer’ was the dominant theme that emerged. There were 7 subthemes: 1.the Diagnosis of cancer was received with shock and fear; 2.during Surgical Discussion both BCS and UM were discussed; BM was discouraged by the surgeon 3.women Misperceived Risk, misunderstanding recurrence and survival rates 4.Women’s choice for UM was due to fear of recurrence and/ or radiation 5.Women’s choice for BM was due to fear of recurrence, ‘never wanting to do this again’ and/or need for cosmetic balance 6.Sources of Information varied in importance, previous cancer experience had the greatest impact 7.women were actively Controlling Outcomes, more surgery was seen as greater control. Conclusions: Women seeking UM and BM for treatment of their early stage breast cancer manage their fear of recurrence and ‘never wanting to go through this again’ by undergoing more extensive surgery. The patient’s effort to control the cancer outcome is the driving factor behind women choosing mastectomy.

Prospective assessment of contralateral prophylactic mastectomy decision-making in women with average risk: an application of perceptual mapping

2019 ◽  
Author(s):  
Judith R Greener ◽  
Sarah B Bass ◽  
Mohammad Alhajji ◽  
Thomas F Gordon
Keyword(s):  
Breast Cancer ◽  
Risk Factors ◽  
Decision Making ◽  
Prospective Study ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Contralateral Prophylactic Mastectomy ◽  
Internet Survey ◽  
Average Risk ◽  
Perceptual Mapping

Abstract Women with early-stage unilateral breast cancer and no familial or genetic risk factors are increasingly electing contralateral prophylactic mastectomy (CPM), despite the lack of evidence demonstrating improved outcomes. To better understand and extend the literature focused on treatment decision-making, a survey was conducted among women with early-stage breast cancer and no associated risk factors, who were in the process of making a surgical decision. This prospective study sought to expand our understanding of the factors that influence patients’ decision to have CPM, with the goal of providing healthcare providers with useful guidance in supporting breast cancer patients who are making treatment decisions. Data were collected for this prospective study through an internet survey. Results were analyzed using perceptual mapping, a technique that provides visual insight into the importance of specific variables to groups of women making different surgical decisions, not available through conventional analyses. Results suggest that women more likely to elect CPM demonstrate greater worry about breast cancer through experiences with others and feel the need to take control of their health through selection of the most aggressive treatment option. The information obtained offers guidance for the development of targeted intervention and counsel that will support patients’ ability to make high quality, informed decisions.

A misperceived threat: Understanding the increasing mastectomy rates.

2015 ◽  
Vol 33 (28_suppl) ◽  
pp. 75-75
Author(s):  
Andrea Marie Covelli ◽  
Nancy N. Baxter ◽  
Margaret Fitch ◽  
Frances Catriona Wright
Keyword(s):  
Decision Making ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Treatment Options ◽  
Contralateral Prophylactic Mastectomy ◽  
The United States ◽  
Breast Conserving Therapy ◽  
Average Risk ◽  
Sources Of Information ◽  
Structured Interviews

75 Background: Rates of unilateral (UM) and contralateral prophylactic mastectomy (CPM) for early-stage breast cancer (ESBC) have been increasing. Both surgeons’ preference and patients’ choice have been suggested to play a role. Methods: A qualitative study was conducted examining surgeon’s practices and patient’s decision-making during treatment for ESBC. The Health-Belief Model was applied identifying factors influential in the choice for UM+/-CPM. Purposive sampling identified non-high-risk women across Toronto, Canada who were candidates for breast conserving therapy (BCT) but underwent UM+/-CPM. Academic and community breast surgeons from across Ontario, Canada and the United States were also recruited. Data were collected through semi-structured interviews. Constant comparative analysis identified key ideas. Results: 29 patients and 45 surgeons were interviewed. The dominant theme was the ‘misperceived threat of ESBC: an overestimated risk’. Surgeons described the high survivability of ESBC, yet patients greatly overestimated the threat of death from their cancer and strived to eliminate this threat by choosing UM+/-CPM. Surgeons described BCT and UM as equivalent treatment options for ESBC, and recommended BCT. In this average-risk population CPM was discouraged by the surgeons describing no survival advantage; despite this, women requested UM+CPM. Personal cancer experiences with family and friends were extremely influential in women’s request for UM+/-CPM. Previous negative experiences translated into an overestimated risk of recurrence, contralateral cancer, metastasisand subsequent death. Patients’ misperceived the severity of ESBC, and believed that by choosing UM+/-CPM they would live longer. Most women did not perceive any risks of undergoing mastectomy, yet many had ongoing issues with skin sensation, cosmesis and body image. Conclusions: Despite surgeons counseling otherwise, women greatly overestimated the risk of ESBC and misperceived the benefits of mastectomy. As undergoing UM+/-CPM is not without risks, improved discussion of patient sources of information and fears around survival may benefit surgical consultations, facilitating informed decision-making.

Seeking a no-regrets decision: Women's rationale for choosing contralateral prophylactic mastectomy (CPM).

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 152-152 ◽  
Author(s):  
Diane Bloom ◽  
Stephanie B. Wheeler ◽  
Kandace P McGuire ◽  
Clara Lee ◽  
Kevin Weinfurt ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Prophylactic Mastectomy ◽  
Early Stage ◽  
Qualitative Interviews ◽  
Low Risk ◽  
Theory Approach ◽  
Unilateral Breast Cancer ◽  
Peace Of Mind ◽  
Risk Of Cancer

152 Background: More women with early-stage unilateral breast cancer and low genetic risk are opting for CPM, despite their low risk of developing cancer in their healthy breast and evidence to demonstrate that CPM improves neither survival nor quality of life, while increasing the risk of surgical complications. Little is known about the factors that motivate this irreversible decision. Methods: We conducted comprehensive qualitative interviews with 42 women at low risk for contralateral breast cancer (CBC) who had CPM in the last 10 years. We recorded and transcribed the interviews and analyzed them using a grounded theory approach. Results: Contrary to hypotheses that newly diagnosed women overestimate their CBC risk, study patients knew of the low risk of cancer in their healthy breast, but still chose CPM. Statistics were unpersuasive; given healthy lifestyles and lack of risk factors, they felt unlucky to get breast cancer and feared they would be unlucky again. They believed CPM would give them more peace of mind and the fewest regrets should cancer return. Avoiding mammograms was important, given the potential for callbacks, biopsies, and more bad news. Avoiding radiation and wanting matching breasts were cited less often. Most were mainly focused on reducing their cancer risk and could not recall having critical information about CPM’s potential harms. A few knew of likely harms but misjudged their impact. When told of CPM’s higher risk of complications, most dismissed this as a disclaimer, believing they would get through surgery well. Despite experiencing negative effects of CPM, 38 of 42 stated they would make the same decision again. Conclusions: When choosing CPM, most women felt confident in making their decision, although many had incomplete knowledge of potential long-term impacts. Nevertheless the majority of women who chose CPM did not regret their decision, suggesting that women who elect CPM are selecting a treatment option that is consistent with their long-term personal values and preferences. While important to ensure women know potential long-term harms, our findings suggest they may not necessarily be dissuaded from CPM by more data, though they may be better prepared for it’s aftermath.

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