The Untold Story of Late Effects: A Qualitative Analysis of Breast Cancer Survivors’ Emotional Responses to Late Effects

Author(s):  
Jodie Rosenberg ◽  
Phyllis Butow ◽  
Joanne Shaw

Abstract Purpose Breast cancer survivors are at increased risk of adverse outcomes, called late effects, years after the completion of active treatment. Late effects can significantly impair physical functioning. The current study aimed to explore breast cancer survivors’ experiences, perceptions and concerns about late effects.Methods 36 women treated for breast cancer in the last 10 years participated in semi-structured telephone interviews. Participant views were sought with respect to knowledge, experience and perceived longer-term risk. A thematic analysis was conducted.Results Four themes emerged from the data: (1) late effects awareness, (2) framing and coping, (3) uncertainty and (4) management. There was a range of emotional responses to late effects however many participants reported being unaware of their risk of late effects. Participants conceptualised late effects as any long-term effect of treatment regardless of the time of onset. Women reported living with constant uncertainty and feared cancer recurrence. Many were focused on managing long-term treatment side effects, rather than late effects.Conclusion Many women undergo treatment and remain unaware of associated late effect risks. National guidelines recommend patients be informed about late effects however the results of this study suggest a gap between policy and practice. Evidence-based interventions are needed to equip women with strategies to physically and emotionally manage late effects.

2021 ◽  
Author(s):  
Lindsay L. Puckett ◽  
Shahryar G. Saba ◽  
Sonia Henry ◽  
Stacey Rosen ◽  
Elise Rooney ◽  
...  

2018 ◽  
Vol 36 (20) ◽  
pp. 2061-2069 ◽  
Author(s):  
Rola Hamood ◽  
Hatem Hamood ◽  
Ilya Merhasin ◽  
Lital Keinan-Boker

Purpose Breast cancer treatments have been associated with an increased risk of multiple health-related adverse outcomes, but the relationship with diabetes remains unclear. This study investigated the association between hormone therapy and diabetes risk in breast cancer survivors. Patients and Methods We performed a case-cohort study of 2,246 female survivors recruited from the Leumit health care fund who were diagnosed with primary nonmetastatic invasive breast cancer in 2002 through 2012. A 20% random subcohort was sampled at baseline, and all diabetes cases were identified. Adjusted hazard ratios (HRs) with 95% CIs were estimated by weighted Cox proportional hazards regression models. Results Of 2,246 breast cancer survivors, 324 developed diabetes over a mean follow-up of 5.9 years. The crude cumulative incidence of diabetes that accounted for death as a competing risk was 20.9% (95% CI, 18.3% to 23.7%). In multivariable-adjusted models, hormone therapy was associated with increased diabetes risk (HR, 2.40; 95% CI, 1.26 to 4.55; P = .008). The hazard for tamoxifen use (HR, 2.25; 95% CI, 1.19 to 4.26; P = .013) was less pronounced than the use of aromatase inhibitors (HR, 4.27, 95% CI, 1.42 to 12.84; P = .010). Conclusion Active hormone therapy is a significant risk factor of diabetes among breast cancer survivors. Although cessation of treatment is not recommended because the survival benefits of hormone therapy outweigh the risks, preventive strategies aimed at lifestyle modifications may minimize the risk.


Author(s):  
Eden R. Brauer ◽  
Elisa F. Long ◽  
Laura Petersen ◽  
Patricia A. Ganz

Abstract Purpose Breast cancer-specific survivorship care guidelines for the more than 3.8 million survivors in the U.S. are available, but implementation in clinical practice remains challenging. We examined current practice patterns and factors associated with guideline-concordant survivorship care among oncologists. Methods A national sample of medical oncologists, recruited using two databases, participated in a survey focused on practice patterns for breast cancer survivorship care. A “survivorship care composite score” was calculated for each respondent based on provision of services recommended in the survivorship guidelines. Descriptive statistics and multivariable linear regression analyses examined associations between physician and practice characteristics and composite scores. Results The survey was completed by 217 medical oncologists, with an overall response rate of 17.9% and eligibility rate of 56.9% for those who responded. Oncologists reported high engagement in evaluation of disease recurrence (78%). Performed less frequently were the provision of survivorship care plans (46%), assessment of psychosocial long-term and late effects (34%), and screening for subsequent cancers (34%). Lack of survivorship care training (p = 0.038) and not routinely informing patients about potential late effects (p = 0.003) were significantly associated with poorer survivorship care composite scores. Conclusions Despite the availability of disease-specific survivorship care guidelines, adherence to their recommendations in clinical practice is suboptimal. Survey results identified key gaps in survivorship care for breast cancer survivors, particularly related to subsequent primary cancers and psychosocial long-term and late effects. Implications for Cancer Survivors Improving the delivery of comprehensive survivorship care for the growing population of breast cancer survivors is a high priority. Disease-specific clinical guidelines for cancer survivorship provide valuable recommendations, but innovative strategies are needed to integrate them into the care of long-term breast cancer survivors.


2019 ◽  
Vol 15 (2) ◽  
pp. e98-e109 ◽  
Author(s):  
Eden R. Brauer ◽  
Elisa F. Long ◽  
Joy Melnikow ◽  
Peter M. Ravdin ◽  
Patricia A. Ganz

PURPOSE: According to the Institute of Medicine, high-quality cancer care should include effective communication between clinicians and patients about the risks and benefits, expected response, and impact on quality of life of a recommended therapy. In the delivery of oncology care, the barriers to and facilitators of communication about potential long-term and late effects, post-treatment expectations, and transition to survivorship care have not been fully defined. PATIENTS AND METHODS: We collected qualitative data through semistructured interviews with medical oncologists and focus groups with breast cancer survivors and applied the Theoretical Domains Framework to systematically analyze and identify the factors that may influence oncologists’ communication with patients with breast cancer about the long-term and late effects of adjuvant therapy. RESULTS: Eight key informant interviews with medical oncologists and two focus groups with breast cancer survivors provided data. Both oncologists and patients perceived information on long-term effects as valuable in terms of improved clinical communication but had concerns about the feasibility of inclusion before treatment. They described the current approaches to communication of therapy risks as a brief laundry list that emphasized acute adverse effects and minimized more long-term issues. We describe the barriers to communication about potential long-term effects from the perspectives of both groups. CONCLUSION: This study provides insight into oncologists’ communication with patients with breast cancer regarding the potential long-term and late effects of adjuvant chemotherapy and about setting realistic expectations for life after treatment. Opportunities to improve oncologists’ communication about the potential toxicities of therapy, particularly regarding long-term and late effects, should be examined further.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11569-11569 ◽  
Author(s):  
Lindsay Puckett ◽  
Shahryar Saba ◽  
Sonia Henry ◽  
Stacey Rosen ◽  
Elise Rooney ◽  
...  

11569 Background: Long-term breast cancer survivors are at risk of late effects from cardiotoxic (tox) radiation (RT) and chemotherapy (chemo). However, there is a paucity of data to recommend appropriate cardiac screening for those ~10 years (yrs) after diagnosis (dx). This phase II, single arm study assessed multimodality screening in a heterogeneous cohort of long-term survivors. Methods: Our prospective, single center pilot study enrolled 201 (of 200 planned) eligible patients (pts): age 18-65 at dx, with treatment (tx) for breast cancer (any stage/tx) in 2004-2011 (≥6 yrs prior), with no cardiac disease (dz) at dx. The primary endpoint was presence of any cardiac dz (preclinical or clinical) on electrocardiogram (EKG), echocardiogram (echo), or coronary artery calcium CT (CAC CT); secondary endpoint included clinical (clin) dz alone. Subgroups assessed were: no tox chemo or RT (no tox), tox RT (left-sided) alone, tox chemo (anthracycline) alone, and both tox chemo and tox RT (tox chemoRT). Results: After enrollment (6/2017-7/2018), 200 pts had sufficient data for analysis. Median age was 50 (29-65) at dx, 63 (37-77) at imaging, and interval (dx to imaging) was 11.5 (6.7-14.5) yrs. There were 44% no tox, 31.5% tox RT, 16% tox chemo, and 8.5% tox chemoRT pts. Among all pts, 77.6% displayed evidence of any cardiac dz, 51.5% had clin dz. Per modality, rates of any and clin dz were: 27.1%/10% EKG, 50.0%/25.3% echo, and 50.8%/45.8% CAC CT. Among subgroups, these rates were: 73.9%/53.4% no tox, 82.5%/58% tox RT, 75%/38.7% tox chemo, and 82.4%/35.3% tox chemoRT (NS on χ2 test, p = .58/p = .15). Multivariable logistic regression with tox RT, tox chemo, and age as covariates, showed no significant tox RT (NS) or tox chemo effect (NS), however, increasing age was significantly associated with higher incidence of cardiac dz (p < 0.01; OR = 1.12 per yr, 95% CI: 1.07-1.18). Conclusions: Among pts with a median of > 10 yrs post breast cancer tx, multimodality CAROLE screening was feasible and showed high rates of cardiac dz (any/clin = 77.6%/51.5%) among all subgroups, including those without tox tx. This study provides evidence for long-term cardiac screening in a diverse group of breast cancer survivors and provides a novel pathway for evaluation. Clinical trial information: NCT03235427.


2004 ◽  
Vol 31 (3) ◽  
pp. 633-639 ◽  
Author(s):  
Karen M. Gil ◽  
Merle H. Mishel ◽  
Michael Belyea ◽  
Barbara Germino ◽  
Laura S. Porter ◽  
...  

2021 ◽  
Vol 53 (01) ◽  
pp. 22-26

Doege D, Thong MS, Koch-Gallenkamp L et al.Age-specific prevalence and determinants of depression in long-term breast cancer survivors compared to female population controls. Cancer Med 2020; 9: 8713–8721. doi:10.1002/cam4.3476


The Breast ◽  
2021 ◽  
Vol 56 ◽  
pp. S80-S81
Author(s):  
P. Santiá ◽  
A. Jansana ◽  
T. Sanz ◽  
I. de la Cura ◽  
M. Padilla-Ruiz ◽  
...  

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