scholarly journals “Will It Affect Our Chances of Having Children?” and Feeling “Like a Ticking Bomb” —The Fertility Concerns and Fears of Cancer Progression and Recurrence in Cancer Treatment Decision-Making Among Young Women Diagnosed With Gynaecological or Breast Cancer

2021 ◽  
Vol 12 ◽  
Author(s):  
Aleksandra Sobota ◽  
Gozde Ozakinci

Objective: Cancer treatment decision making process is particularly fraught with challenges for young women because the treatment can affect their reproductive potential. Among many factors affecting the process, fears of cancer progression and recurrence can also be important psychological factors. Our aim is to apply Common-Sense Model and shared decision-making model to explore experiences of treatment decision-making women of reproductive age who were diagnosed with gynaecological or breast cancer and the influence of fertility issues and fears of cancer progression and recurrence.Method: We conducted telephone interviews with 24 women who were diagnosed with gynaecological or breast cancer aged 18–45, who finished active treatment within 5 years prior to study enrolment and had no known evidence of cancer recurrence at the time of participation. They were recruited from three NHS oncology clinics in Scotland and online outlets of cancer charities and support organisations. We analysed the data using Braun and Clarke's thematic analysis method as it allows for both inductive and deductive analyses.Results: We identified five main themes pertaining to treatment-related decision-making experiences and fertility issues and fear of progression and recurrence: Becoming aware of infertility as a potential consequence of cancer treatment; Balancing-prioritising cancer and fertility; Decisions about treatments; Evaluation of treatment decisions; and The consequences of treatments. Sub-themes have also been reported. Different factors such as whether the cancer is breast or gynaecological, physicians' willingness of discussing fertility, influence of others in decision-making, childbearing and relationship status as well as fear of cancer recurrence emerged as important.Conclusion: The importance of physicians directly addressing fertility preservation in the process of treatment decision-making and not treating it as an “add-on” was evident. Satisfaction with treatment decisions depended on both the quality of the process of decision making and its outcome. Fear of recurrence was present in different parts of the adaptation process from illness perceptions to post-treatment evaluation of decisions. Both Common-Sense Model and shared decision-making model were helpful in understanding and explaining young women's experience of treatment decision-making and fertility concerns.

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6031-6031
Author(s):  
S. Hawley ◽  
P. Lantz ◽  
B. Salem ◽  
A. Fagerlin ◽  
N. Janz ◽  
...  

6031 Background: The choice of surgical breast cancer treatment represents an opportunity for shared decision making (SDM), since both mastectomy and breast conserving surgery are viable options. Yet women vary in their desire for involvement in this decision. Correlates of SDM and/or the level of involvement in breast cancer surgical treatment decision-making are not known. Methods: Breast cancer patients of Detroit and Los Angeles SEER registries were mailed a questionnaire shortly after diagnosis in 2002 (N = 1,800, RR: 77%). Their responses were merged with a surgeon survey (N = 456, RR: 80%) for a dataset of 1,547 patients of 318 surgeons. Surgical treatment decision making was categorized into: 1) surgeon-based; 2) shared; or 3) patient-based. The concordance between a woman’s self-reported actual and desired decisional involvement was categorized as having more, less, or the right amount of involvement. Decision making and concordance were each analyzed as three-level dependent variables using multinomial logistic regression controlling for clustering within surgeons. Independent variables included patient clinical, treatment and demographic factors, surgeon demographic and practice-related factors, and a measure of surgeon-patient communication. Results: 37% of women reported the surgery decision was shared, 25% that it was surgeon-based, and 38% that it was patient-based. Two-thirds experienced the right amount of involvement, while 13% had less and 19% had more. Compared to women who reported a shared decision, those with surgeon-based decision were significantly (p < 0.05) more likely to have male surgeons, and those reporting a patient-based decision were more likely to have received mastectomy vs. breast conserving surgery. Women who were less involved in the surgery decision than they wanted were younger and had less education, while those with more involvement (vs. the right amount) more often had male surgeons. Patient-surgeon communication was associated with decisional involvement. Conclusions: Correlates of SDM and decisional involvement relating to surgical breast cancer treatment differ. Determining patients’ desired role in decision making may as important as achieving a shared decision for evaluating perceived quality of care. No significant financial relationships to disclose.


Author(s):  
Larissa Elisabeth Hillebrand ◽  
Ulrike Söling ◽  
Norbert Marschner

Background: Breast cancer is still the most common malignancy in women worldwide. Once metastasized, breast cancer treatment primarily aims at reducing symptom burden, thereby trying to maintain and improve a patient´s quality of life (QoL), delaying disease progression, and prolonging survival. Curing the disease is not possible in the palliative setting. To better understand metastatic breast cancer patients, their symptoms and wishes, which are important for treatment-decision making and outcome, patient-reported outcomes (PROs) are of great importance, giving an impression of what really matters to and concerns a patient. Summary: Many advances have been made to implicate PROs in clinical trials, non-interventional studies, registries, and clinical routine care of metastatic breast cancer. For example, large phase III trials like PALOMA-3 (NCT01942135), MONALEESA-7 (NCT02278120), HER2CLIMB (NCT02614794), and KEYNOTE-119 (NCT02555657) trials implemented PROs in their trial design to assess the QoL of their trial patients. Also, non-interventional studies on metastatic breast cancer, like e.g., the NABUCCO study (IOM-02240), and prospective non-interventional, multicenter registries e.g., the tumor registry breast cancer (NCT01351584) or the breast cancer registry platform OPAL (NCT03417115), have implemented PROs to assess QoL during the anti-cancer treatment periods of the patients. Key Message: Using PROs in metastatic breast cancer can support shared treatment-decision making and management of symptoms, eventually leading to an improvement in QoL. Progressively, regulatory authorities take PROs into consideration for the approval of new drugs. Hence, the implication of PROs in cancer treatment, and especially in MBC, is of significant value.


2007 ◽  
Vol 25 (29) ◽  
pp. 4628-4634 ◽  
Author(s):  
Suzanne C. O'Neill ◽  
Noel T. Brewer ◽  
Sarah E. Lillie ◽  
Edward F. Morrill ◽  
E. Claire Dees ◽  
...  

Purpose Genomic and other technologies are improving the accuracy with which clinicians can estimate risk for recurrence (RFR) of breast cancer and make judgments about potential benefits of chemotherapy. Little is known of how patients will respond to genomic RFR testing or interact with their physicians to make informed decisions regarding treatment. We assessed interest in genomic RFR testing and patient preferences for incorporating results into treatment decision making. Patients and Methods One hundred thirty-nine women previously treated for early-stage breast cancer completed surveys that presented hypothetical scenarios reflecting different test outcomes and potential decisions. We assessed women's attitudes toward RFR testing, how results would affect their choices about adjuvant treatment, and potential concerns about and perceived benefits of testing. Results The majority of participants said they would “definitely” want to be tested (76%), receive their results (87%), and discuss these results with their physicians. They were willing to pay, on average, $997 for testing. Those who expressed more concerns about testing were less interested in testing and in incorporating results into treatment decision making. Participants were more likely to want chemotherapy when presented with high-risk results and would worry more about those results. They were least likely to trust and most likely to express potential anticipated regret in response to intermediate RFR results. Conclusion Participants expressed strong interest in testing. Although these decisions were sensitive to RFR, participants’ complex reactions to intermediate RFR suggest care is needed when communicating such results.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 227-227
Author(s):  
Valerie Lawhon ◽  
Rebecca England ◽  
Audrey S. Wallace ◽  
Courtney Williams ◽  
Stacey A. Ingram ◽  
...  

227 Background: Shared decision-making (SDM) occurs when both patient and provider are involved in the treatment decision-making process. SDM allows patients to understand the pros and cons of different treatments while also helping them select the one that aligns with their care goals when multiple options are available. This qualitative study sought to understand different factors that influence early-stage breast cancer (EBC) patients’ approach in selecting treatment. Methods: This cross-sectional study included women with stage I-III EBC receiving treatment at the University of Alabama at Birmingham from 2017-2018. To understand SDM preferences, patients completed the Control Preferences Scale and a short demographic questionnaire. To understand patient’s values when choosing treatment, semi-structured interviews were conducted to capture patient preferences for making treatment decisions, including surgery, radiation, or systemic treatments. Interviews were audio-recorded, transcribed, and analyzed using NVivo. Two coders analyzed transcripts using a constant comparative method to identify major themes related to decision-making preferences. Results: Amongst the 33 women, the majority of patients (52%) desired shared responsibility in treatment decisions. 52% of patients were age 75+ and 48% of patients were age 65-74, with an average age of 74 (4.2 SD). 21% of patients were African American and 79% were Caucasian. Interviews revealed 19 recurrent treatment decision-making themes, including effectiveness, disease prognosis, physician and others’ opinions, side effects, logistics, personal responsibilites, ability to accomplish daily activities or larger goals, and spirituality. EBC patient preferences varied widely in regards to treatment decision-making. Conclusions: The variety of themes identified in the analysis indicate that there is a large amount of variability to what preferences are most crucial to patients. Providers should consider individual patient needs and desires rather than using a “one size fits all” approach when making treatment decisions. Findings from this study could aid in future SDM implementations.


2021 ◽  
Vol 15 ◽  
Author(s):  
Shridevi Subramaniam ◽  
Yek-Ching Kong ◽  
Hafizah Zaharah ◽  
Cuno SPM Uiterwaal ◽  
Andrea Richard ◽  
...  

2020 ◽  
Vol 40 (4) ◽  
pp. 540-544
Author(s):  
Patricia I. Jewett ◽  
Rachel I. Vogel ◽  
Mary C. Schroeder ◽  
Joan M. Neuner ◽  
Anne H. Blaes

Background. Having dependent children may affect cancer treatment decisions. We sought to describe women’s surgery and chemotherapy decisions in nonmetastatic breast cancer by parental status. Methods. We conducted a secondary analysis of the 2015 cross-sectional Share Thoughts on Breast Cancer Study, conducted in 7 Midwestern states in the United States, restricted to women of prime parenting age (aged 20–50 years) who consented to the use of their medical records ( N = 225). We examined treatment decisions using data visualization and logistic regression (adjusted for age, stage, family history of breast cancer, income, education, race, health insurance, and partner status). Results. Women with dependent children received bilateral mastectomy more often than women without dependent children (adjusted odds ratio 3.09, 95% confidence interval 1.44–6.62).We found no differences in the receipt of chemotherapy by parental status. Women reported more active roles in surgery than in chemotherapy decision making. Conclusions. As a likely factor in cancer treatment decisions, parental status should be addressed in clinical practice and research. Future research should assess patients’ sense of ownership in treatment decision making by treatment type.


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