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The lived experience of patients with breast cancer on adjuvant endocrine therapy: side effects and coping strategies during the first year of medication initiation

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Abstract

Purpose

Adjuvant endocrine therapy (AET) is pivotal for hormone receptor-positive breast cancer patients, significantly enhancing survival rates. Yet, adherence to AET remains challenging due to side effects. This study delves into the lived experience of breast cancer survivors concerning AET-induced side effects and examines differences in symptom profiles between Tamoxifen and aromatase inhibitors (AIs).

Methods

We interviewed 35 breast cancer survivors on AET, conducting qualitative iterative analysis using grounded theory. A codebook was developed to aid data coding and interpretation. NVIVO software facilitated comprehensive transcript analysis.

Results

Survivors reported a spectrum of side effects like hot flashes, sexual issues, joint pain, stiffness, mood swings, and fertility concerns. Symptom profiles differed based on AET type. Tamoxifen users experienced more frequent sexual side effects and mood swings, while AIs were linked to joint pain, stiffness, and bone health worries. Those on AET for over 6 months expressed heightened concerns about side effects.

Conclusion

Tailored patient education, aligned with AET type, empowers survivors to manage side effects using self-regulatory strategies. Acknowledging distinct symptom profiles enables informed decisions, improving adherence and quality of life.

Implications

This study underscores tailored survivorship support, equipping patients with tools to manage side effects, enhancing adherence, and long-term outcomes. The findings inform the integration of comprehensive survivorship programs, emphasizing individualized strategies for managing side effects and promoting better adherence and improved quality of life.

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Data Availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

References

  1. Bashar MA, Begam N (2022) Breast cancer surpasses lung cancer as the most commonly diagnosed cancer worldwide. Indian J Cancer 59(3):438–439

    PubMed  Google Scholar 

  2. Arnold M et al (2022) Current and future burden of breast cancer: Global statistics for 2020 and 2040. Breast 66:15–23

    Article  PubMed  PubMed Central  Google Scholar 

  3. Giaquinto AN et al (2022) Breast cancer statistics, 2022. CA: A Cancer J Clin 72(6):524–541

    Google Scholar 

  4. Berry DA et al (2005) Effect of Screening and Adjuvant Therapy on Mortality from Breast Cancer. N Engl J Med 353(17):1784–1792

    Article  CAS  PubMed  Google Scholar 

  5. Howell A et al (2005) Results of the ATAC (Arimidex, Tamoxifen, Alone or in Combination) trial after completion of 5 years’ adjuvant treatment for breast cancer. Lancet 365(9453):60–62

    Article  CAS  PubMed  Google Scholar 

  6. Davies C et al (2011) Early Breast Cancer Trialists′ Collaborative Group (EBCTCG) Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials. Lancet 378(9793):771–84

    Article  CAS  PubMed  Google Scholar 

  7. Early Breast Cancer Trialists' Collaborative G (1998) Tamoxifen for early breast cancer : an overview of the randomized trials. Lancet 351: p. 1451–1467

  8. Burstein HJ et al (2010) American society of clinical oncology clinical practice guideline: update on adjuvant endocrine therapy for women with hormone receptor–positive breast cancer. J Clin Oncol 28(23):3784–3796

  9. Murphy CC et al (2012) Adherence to adjuvant hormonal therapy among breast cancer survivors in clinical practice: a systematic review. Breast Cancer Res Treat 134(2):459–478

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Partridge AH, Wang PS, Winer EP, Avorn J (2003) Nonadherence to adjuvant tamoxifen therapy in women with primary breast cancer. J Clin Oncol 21(4):602–606

    Article  CAS  PubMed  Google Scholar 

  11. Partridge AH et al (2008) Adherence to initial adjuvant anastrozole therapy among women with early-stage breast cancer. J Clin Oncol 26(4):556–562

    Article  CAS  PubMed  Google Scholar 

  12. Grunfeld EA, Hunter MS, Sikka P, Mittal S (2005) Adherence beliefs among breast cancer patients taking tamoxifen. Patient Educ Couns 59(1):97–102

    Article  PubMed  Google Scholar 

  13. Demissie S, Silliman RA, Lash TL (2001) Adjuvant tamoxifen: predictors of use, side effects, and discontinuation in older women. J Clin Oncol 19(2):322–328

    Article  CAS  PubMed  Google Scholar 

  14. Lash TL et al (2006) Adherence to tamoxifen over the five-year course. Breast Cancer Res Treat 99(2):215–220

    Article  PubMed  Google Scholar 

  15. Kahn KL et al (2007) Patient centered experiences in breast cancer: predicting long-term adherence to tamoxifen use. Med Care 45(5):431–439

    Article  PubMed  Google Scholar 

  16. Güth U et al (2011) Drug switch because of treatment-related adverse side effects in endocrine adjuvant breast cancer therapy: how often and how often does it work? Breast Cancer Res Treat 129(3):799–807

    Article  PubMed  Google Scholar 

  17. Cella D, Fallowfield LJ, Fallowfield LJ (2008) Recognition and management of treatment-related side effects for breast cancer patients receiving adjuvant endocrine therapy. Breast Cancer Res Treat 107(2):167–180

    Article  CAS  PubMed  Google Scholar 

  18. Pellegrini I et al (2010) Women’s perceptions and experience of adjuvant tamoxifen therapy account for their adherence: breast cancer patients’ point of view. Psychooncology 19(5):472–479

    Article  PubMed  Google Scholar 

  19. Henry NL et al (2012) Predictors of aromatase inhibitor discontinuation as a result of treatment-emergent symptoms in early-stage breast cancer. J Clin Oncol : Off J Am Soc Clin Oncol 30(9):936–942

    Article  CAS  Google Scholar 

  20. Kirk MC, Hudis CA (2008) Insight into Barriers Against Optimal Adherence to Oral Hormonal Therapy in Women with Breast Cancer. Clin Breast Cancer 8(2):155–161

    Article  PubMed  Google Scholar 

  21. Wen K-Y, Smith R, Padmanabhan A, Goldstein L (2017) Patient experience of taking adjuvant endocrine therapy for breast cancer: a tough pill to swallow. Patient Experience J 4(3):104–114

    Article  Google Scholar 

  22. Stanton AL, Petrie KJ, Partridge AH (2014) Contributors to nonadherence and nonpersistence with endocrine therapy in breast cancer survivors recruited from an online research registry. Breast Cancer Res Treat 145(2):525–534

    Article  PubMed  Google Scholar 

  23. Neugut A et al (2012) Non-initiation of adjuvant hormonal therapy in women with hormone receptor-positive breast cancer: The Breast Cancer Quality of Care Study (BQUAL). Breast Cancer Res Treat 134(1):419–428

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  24. Rani NS, Abd Wahab MS, Zulkifly HH, SH (2021) Mohamad, Factors associated with disease progression among hormone receptor-positive breast cancer patients treated with endocrine therapy: A 5-year cross-sectional, retrospective follow-up study. J Appl Pharm Sci 11(1): p. 072–077

  25. Huiart L, Ferdynus C, Giorgi R (2013) A meta-regression analysis of the available data on adherence to adjuvant hormonal therapy in breast cancer: summarizing the data for clinicians. Breast Cancer Res Treat 138(1):325–328

    Article  PubMed  Google Scholar 

  26. Sood N et al (2022) Association of Endocrine Therapy Initiation Timeliness With Adherence and Continuation in Low-Income Women With Breast Cancer. JAMA Netw Open 5(8):e2225345–e2225345

    Article  PubMed  PubMed Central  Google Scholar 

  27. Strauss A. Corbin JM, Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 1998: SAGE Publications

  28. Beckwée D, Leysen L, Meuwis K, Adriaenssens N (2017) Prevalence of aromatase inhibitor-induced arthralgia in breast cancer: a systematic review and meta-analysis. Support Care Cancer 25:1673–1686

    Article  PubMed  Google Scholar 

  29. Din OS, Dodwell D, Wakefield RJ, Coleman RE (2010) Aromatase inhibitor-induced arthralgia in early breast cancer: what do we know and how can we find out more? Breast Cancer Res Treat 120:525–538

    Article  CAS  PubMed  Google Scholar 

  30. Kligman L, Younus J (2010) Management of hot flashes in women with breast cancer. Curr Oncol 17(1):81–86

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  31. Baumgart J et al (2013) Sexual dysfunction in women on adjuvant endocrine therapy after breast cancer. Menopause 20(2):162–168

    Article  PubMed  Google Scholar 

  32. Helland T et al (2019) Drug monitoring of tamoxifen metabolites predicts vaginal dryness and verifies a low discontinuation rate from the Norwegian Prescription Database. Breast Cancer Res Treat 177(1):185–195

    Article  CAS  PubMed  Google Scholar 

  33. van Laar M et al (2012) Pain treatment in arthritis-related pain: beyond NSAIDs. Open Rheumatol J 6:320–330

    Article  PubMed  PubMed Central  Google Scholar 

  34. Price R et al (2022) Oral and topical treatment of painful diabetic polyneuropathy: practice guideline update summary: report of the AAN Guideline Subcommittee. Neurology 98(1):31–43

    Article  CAS  PubMed  Google Scholar 

  35. Browall M, Mijwel S, Rundqvist H, Wengström Y (2018) Physical activity during and after adjuvant treatment for breast cancer: an integrative review of women’s experiences. Integr Cancer Ther 17(1):16–30

    Article  PubMed  Google Scholar 

  36. Rogers LQ et al (2023) Physical activity intervention benefits persist months post-intervention: Randomized trial in breast cancer survivors. J Cancer Survivorship p. 1–13

  37. Galantino ML et al (2012) Impact of yoga on functional outcomes in breast cancer survivors with aromatase inhibitor–associated arthralgias. Integr Cancer Ther 11(4):313–320

    Article  PubMed  Google Scholar 

  38. Stout NL et al (2021) A systematic review of rehabilitation and exercise recommendations in oncology guidelines. CA Cancer J Clin 71(2):149–175

    Article  PubMed  Google Scholar 

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Acknowledgements

We are very grateful to all the women who shared their experiences with us by participating in this interview study.

Funding

This study was funded by NCI 5R01CA222246-05 and the SKCC Cancer Center Support Grant (NCI Award 5P30CA056036-19).

Author information

Authors and Affiliations

  1. Department of Medical Oncology, Thomas Jefferson University, Philadelphia, PA, USA

    Sameh Gomaa, AnaMaria Lopez, Rachel Slamon, Rita Smith & Kuang-Yi Wen

  2. Cancer Prevention and Control, Fox Chase Cancer Center/Temple University Health System, Philadelphia, PA, USA

    Emmanuel Lapitan & Suzanne M. Miller

  3. Department of Pharmacy Practice, Thomas Jefferson University, Philadelphia, PA, USA

    Ginah Nightingale

Authors
  1. Sameh Gomaa
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  2. AnaMaria Lopez
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  3. Rachel Slamon
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  4. Rita Smith
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  5. Emmanuel Lapitan
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  6. Ginah Nightingale
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  7. Suzanne M. Miller
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  8. Kuang-Yi Wen
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Contributions

All authors reviewed and edited the manuscript.

Rita Smith, Rachel Slamon, Sameh Gomaa and Emmanuel Lapitan obtained recordings.

Rachel Slamon and Sameh Gomaa transcribed and completed the qualitative analysis.

Sameh Gomma and Kuang-Yi Wen conceptualized and developed the manuscript.

Corresponding author

Correspondence to Kuang-Yi Wen.

Ethics declarations

Ethical approval

All subjects gave their informed consent for inclusion before they participated in the study. The study was conducted in accordance with 45 CFR 46. 109 (f)(1), and the protocol was approved by the Ethics Committee of Thomas Jefferson University IRB using control number 19F.265.

Competing interests

The authors declare no competing interests.

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Gomaa, S., Lopez, A., Slamon, R. et al. The lived experience of patients with breast cancer on adjuvant endocrine therapy: side effects and coping strategies during the first year of medication initiation. Support Care Cancer 31, 719 (2023). https://doi.org/10.1007/s00520-023-08170-y

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