Skip to main content

Advertisement

Log in

Unmet needs and problems related to employment and working as reported by survivors with metastatic breast cancer

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

By 2020, the US population living with metastatic breast cancer (MBC) has exceeded 165,000. A knowledge gap exists regarding the factors affecting work ability for these individuals. We sought to characterize the work status, importance of work, and work-related information needs for women living with MBC.

Methods

We conducted an online survey using an MBC listserv and clinic flyers in 2014–2015. Respondents working at the time of MBC diagnosis were divided into “stably-working” and “no-longer-working” based on employment status at the time of survey. Comparisons were made with chi-square or two-tailed t test.

Results

Respondents (n = 133) were predominantly non-Hispanic White (93.2%); 72 were stably-working, while 61 reported no-longer-working. Those no-longer-working were older (54.0 vs 49.5 years old, p < 0.01, Cohen’s d = 0.55), further from initial diagnosis of MBC (4.6 vs 3.3 years, p < 0.01, Cohen’s d = 0.36), and reported high rates of life interference due to MBC (n = 51, 83.6% vs n = 39, 54.2%, p < 0.01, Cramer’s V = 0.32). Stably-working respondents considered work to be important (n = 58, 80.5% vs n = 18, 29.5%, p < 0.01, Cramer’s V = 0.57); the top reasons cited were financial and/or insurance (80.4%), importance of staying busy (67.9%), and desire to support themselves and family (64.3%). The stably-working respondents more often valued information on how to talk with employers or co-workers about diagnosis (n = 38, 57.6% vs n = 16, 27.1%; p < 0.01), legal rights in workplace (n = 43, 65.2% vs n = 22, 36.7%; p < 0.01), when to think about stopping work (n = 45, 68.2% vs n = 18, 30%; p < 0.01), and applying for disability (n = 42, 63.6% vs n = 26, 42.6%; p < 0.05), when compared to no-longer-working.

Conclusion

The decision to stop working may represent a subsequent event driven by cancer progression. This research highlights the ongoing need of information targeting MBC to facilitate the management of employment and financial issues early in the MBC trajectory.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

The data generated and analyzed during the current study will be available upon direct request to the corresponding author (MES) to ensure that we protect subject’s privacy.

Code availability

Not applicable.

References

  1. Mariotto AB, Etzioni R, Hurlbert M, Penberthy L, Mayer M (2017) Estimation of the number of women living with metastatic breast cancer in the United States. Cancer Epidemiol Biomarkers Prev 26(6):809–815. https://doi.org/10.1158/1055-9965.EPI-16-0889

    Article  PubMed  PubMed Central  Google Scholar 

  2. DeSantis CE, Ma J, Gaudet MM, Newman LA, Miller KD, Goding Sauer A, Jemal A (2019) Siegel RL (2019) Breast cancer statistics. CA Cancer J Clin 69(6):438–451. https://doi.org/10.3322/caac.21583

    Article  Google Scholar 

  3. Mariotto AB, Zou Z, Zhang F, Howlader N, Kurian AW, Etzioni R (2018) Can we use survival data from cancer registries to learn about disease recurrence? The case of breast cancer. Cancer Epidemiol Biomarkers Prev 27(11):1332–1341. https://doi.org/10.1158/1055-9965.EPI-17-1129

    Article  PubMed  PubMed Central  Google Scholar 

  4. Rocque GB, Rasool A, Williams BR, Wallace AS, Niranjan SJ, Halilova KI, Turkman YE, Ingram SA, Williams CP, Forero-Torres A, Smith T, Bhatia S, Knight SJ (2019) What is important when making treatment decisions in metastatic breast cancer? A qualitative analysis of decision-making in patients and oncologists. Oncologist 24(10):1313–1321. https://doi.org/10.1634/theoncologist.2018-0711

    Article  PubMed  PubMed Central  Google Scholar 

  5. Saad ED, Katz A, Buyse M (2010) Overall survival and post-progression survival in advanced breast cancer: a review of recent randomized clinical trials. J Clin Oncol 28(11):1958–1962. https://doi.org/10.1200/JCO.2009.25.5414

    Article  PubMed  Google Scholar 

  6. Cardoso F, Spence D, Mertz S et al (2018) Global analysis of advanced/metastatic breast cancer: decade report (2005–2015). Breast (Edinburgh, Scotland) 39:131–138. https://doi.org/10.1016/j.breast.2018.03.002

    Article  Google Scholar 

  7. Tometich DB, Hyland KA, Soliman H, Jim HSL, Oswald L (2020) Living with metastatic cancer: a roadmap for future research. Cancers (Basel) 8;12(12):3684. https://doi.org/10.3390/cancers12123684

    Article  Google Scholar 

  8. Cardoso F, Harbeck N, Fallowfield L, Kyriakides S, Senkus E (2012) Locally recurrent or metastatic breast cancer: ESMO clinical practice guidelines for diagnosis, treatment and follow-up. Ann Oncol 23(SUPPL. 7). https://doi.org/10.1093/annonc/mds232

  9. Mayer M (2011) Living with advanced breast cancer: challenges and opportunities. https://doi.org/10.1016/j.breast.2011.08.004

  10. Sun W, Chen K, Terhaar A et al (2016) Work-related barriers, facilitators, and strategies of breast cancer survivors working during curative treatment. Work 55(4):783–795. https://doi.org/10.3233/WOR-162449

    Article  PubMed  PubMed Central  Google Scholar 

  11. Tevaarwerk AJ, Lee JW, Sesto ME et al (2013) Employment outcomes among survivors of common cancers: the Symptom Outcomes and Practice Patterns (SOAPP) study. J Cancer Surviv 7(2):191–202. https://doi.org/10.1007/s11764-012-0258-2

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  12. Zajacova A, Dowd JB, Schoeni RF, Wallace RB (2015) Employment and income losses among cancer survivors: estimates from a national longitudinal survey of American families. Cancer 121(24):4425–4432. https://doi.org/10.1002/cncr.29510

    Article  PubMed  Google Scholar 

  13. Feuerstein M, Luff GM, Harrington CB, Olsen CH (2007) Pattern of workplace disputes in cancer survivors: a population study of ADA claims. J Cancer Surviv 1:185–192. https://doi.org/10.1007/s11764-007-0027-9

    Article  PubMed  Google Scholar 

  14. Tevaarwerk AJ, Lee J-W, Terhaar A et al (2016) Working after a metastatic cancer diagnosis: factors affecting employment in the metastatic setting from ECOG-ACRIN’s Symptom Outcomes and Practice Patterns study. Cancer 122(3):438–446. https://doi.org/10.1002/cncr.29656

    Article  PubMed  Google Scholar 

  15. Verrill M, Wardley AM, Retzler J, Smith AB, Bottomley C, NíDhochartaigh S, Tran I, Leslie I, Schmid P (2020) Health-related quality of life and work productivity in UK patients with HER2-positive breast cancer: a cross-sectional study evaluating the relationships between disease and treatment stage. Health Qual Life Outcomes 2;18(1):353. https://doi.org/10.1186/s12955-020-01603-w

    Article  Google Scholar 

  16. Wisconsin Oncology Network. https://cancer.wisc.edu/research/innovation/won/. Accessed April 13, 2021

  17. Tuomi K, Ilmarinen J, Jahkola A, Katajarinne L, Tulkki A (1998) Work ability index. 2nd, revised. Finnish Institute of Occupational Health, Helsinki

    Google Scholar 

  18. Fisch M, Lee JW, Manola J et al (2009) Survey of disease and treatment related symptoms in outpatients with invasive cancer of the breast, prostate, lung, or colon/rectum (E2Z02, the SOAPP study) [abstract]. J Clin Oncol 27(suppl):9619

    Article  Google Scholar 

  19. Mayer M, Grober SE (2006) ‘Silent voices’ women with advanced (metastatic) breast cancer share their needs and preferences for information, support and practical resources Living Beyond Breast Cancer (available at http://www.lbbc.org/data/news/LBBCsilentvoices.pdf )

  20. Tevaarwerk AJ, Kwekkeboom K, Buhr KA, Dennee A, Conkright W, Onitilo AA, Robinson E, Ahuja H, Kwong RW, Nanad R, Wiegmann DA, Chen K, LoConte NK, Wisinski KB, Sesto ME (2021) Results from a prospective longitudinal survey of employment and work outcomes in newly diagnosed cancer patients during and after curative-intent chemotherapy: a Wisconsin Oncology Network study. Cancer 127(5):801–808. https://doi.org/10.1002/cncr.33311

    Article  PubMed  Google Scholar 

  21. Rosenzweig M, West M, Matthews J, Stokan M, Yoojin Kook YK, Gallups S, Diergaarde B (2019) Financial toxicity among women with metastatic breast cancer. Oncol Nurs Forum 13;46(1):83–91. https://doi.org/10.1188/19.ONF.83-91

    Article  Google Scholar 

  22. National Comprehensive Cancer Network. Distress Management (Version 2.2021). https://www.nccn.org/professionals/physician_gls/pdf/distress.pdf. Accessed January 28, 2021

  23. Duijts SF, Kieffer JM, van Muijen P, van der Beek AJ (2017) Sustained employability and health-related quality of life in cancer survivors up to four years after diagnosis. Acta oncologica (Stockholm, Sweden) 56(2):174–182

    Article  Google Scholar 

  24. Lundh MH, Lampic C, Nordin K et al (2013) Changes in health-related quality of life by occupational status among women diagnosed with breast cancer—a population-based cohort study. Psycho-Oncology 22(10):2321–2331. https://doi.org/10.1002/PON.3285

    Article  PubMed  Google Scholar 

  25. National Comprehensive Cancer Network. Survivorship (Version 2.2020). https://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf. Accessed January 28, 2021

  26. Wolvers MDJ, Leensen MCJ, Groeneveld IF, Frings-Dresen MHW, De Boer AGEM (2019) Longitudinal associations between fatigue and perceived work ability in cancer survivors. J Occup Rehabil 29(3):540–549. https://doi.org/10.1007/s10926-018-9814-6

    Article  CAS  PubMed  Google Scholar 

  27. Bradley CJ, Wilk A (2014) Racial differences in quality of life and employment outcomes in insured women with breast cancer. J Cancer Surviv 8(1):49–59. https://doi.org/10.1007/s11764-013-0316-4

    Article  PubMed  Google Scholar 

  28. Mujahid MS, Janz NK, Hawley ST et al (2011) Racial/ethnic differences in job loss for women with breast cancer. J Cancer Surviv 5(1):102. https://doi.org/10.1007/S11764-010-0152-8

    Article  PubMed  Google Scholar 

  29. Yu M, Ferrucci LM, Mccorkle R et al (2012) Employment experience of cancer survivors 2 years post-diagnosis in the study of cancer survivors-I. J Cancer Survivor: Res Pract 6(2):210–218. https://doi.org/10.1007/s11764-011-0212-8

    Article  Google Scholar 

  30. Samuel CA, Spencer JC, Rosenstein DL, Reeder-Hayes KE, Manning ML, Sellers JB, Wheeler SB (2020) Racial differences in employment and cost-management behaviors in patients with metastatic breast cancer. Breast Cancer Res Treat 179(1):207–215. https://doi.org/10.1007/s10549-019-05449-9

    Article  CAS  PubMed  Google Scholar 

Download references

Funding

This work was supported by the National Cancer Institute (NCI), Cancer Center Support Grant P30 CA014520, and the School of Medicine and Public Health, University of Wisconsin-Madison, Shapiro Summer Research Program.

Author information

Authors and Affiliations

Authors

Contributions

All authors contributed to the study conception and design, material preparation, and data collection and analysis. Data analysis was completed by Xiao Zhang. An initial draft of the manuscript was written by Athena S. Wilson, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Mary E. Sesto.

Ethics declarations

Ethics approval

Approval was obtained from the Institutional Review Board of the University of Wisconsin. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

Consent to participate

Written informed consent was waived by the institutional review board (IRB).

Consent for publication

Written informed consent was waived by the institutional review board (IRB).

Conflict of interest

The authors declare no competing interests.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (PDF 366 KB)

Supplementary file2 (PDF 110 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Sesto, M.E., Carroll, C.B., Zhang, X. et al. Unmet needs and problems related to employment and working as reported by survivors with metastatic breast cancer. Support Care Cancer 30, 4291–4301 (2022). https://doi.org/10.1007/s00520-021-06755-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-021-06755-z

Keywords

Navigation