Skip to main content


Log in

Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry

  • Published:
Journal of Cancer Survivorship Aims and scope Submit manuscript



Individuals with metastatic cancer experience many medical, physical, and emotional challenges due to changing medical regimens, oscillating disease states, and side effects. The purpose of this study was to describe the type and prevalence of survivorship concerns reported by individuals with metastatic cancer, and their associations with cancer diagnosis, treatment, and socio-demographic variables.


This study utilized data from the Cancer Support Community’s Cancer Experience Registry. Individuals were included if they self-reported a solid tumor metastatic cancer and completed CancerSupportSource, which evaluates five domains of concerns (emotional well-being, symptom burden, body image/healthy lifestyle, healthcare team communication, and relationships/intimacy). Multivariable linear regression examined associations between independent predictors of each survivorship concern domain.


Of the 403 included participants, individuals reported a metastatic diagnosis of breast (43%), colorectal (20%), prostate (7%), lung (7%), gynecologic cancer (6%) and other. Nearly all (96%) reported at least one survivorship concern, with the most prevalent concern about cancer progression or recurrence. Survivorship concerns were higher across multiple domains for individuals unemployed due to disability. Individuals who were less than five years since diagnosis reported higher concerns related to emotional well-being, symptom burden, and healthcare communication compared to those more than five years since diagnosis.


Individuals with metastatic cancer experience a variety of moderate-to-severe survivorship concerns that warrant additional investigation.

Implications for cancer survivors

As the population of individuals with metastatic cancer lives longer, future research must investigate solutions to address modifiable factors associated with survivorship concerns, such as unemployment due to disability.

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.

Fig. 1

Similar content being viewed by others

Data availability

The datasets analyzed during the current study are available from the corresponding author on reasonable request.


  1. Gallicchio L, Devasia TP, Tonorezos E, Mollica MA, Mariotto A. Estimation of the number of individuals living with metastatic Cancer in the United States. J Natl Cancer Inst. 2022;114(11):1476–83.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Mollica MA, Smith AW, Tonorezos E, et al. Survivorship for individuals living with Advanced and metastatic cancers: National Cancer Institute Meeting Report. J Natl Cancer Inst Apr. 2022;11(4):489–95.

    Article  Google Scholar 

  3. Tometich DB, Hyland KA, Soliman H, Jim HSL, Oswald L. Living with metastatic Cancer: a Roadmap for Future Research. Cancers. 2020;12(12).

  4. Lai-Kwon J, Heynemann S, Hart NH, et al. Evolving Landscape of Metastatic Cancer Survivorship: reconsidering Clinical Care, Policy, and Research priorities for the modern era. J Clin Oncol Jun. 2023;20(18):3304–10.

    Article  Google Scholar 

  5. Moghaddam N, Coxon H, Nabarro S, Hardy B, Cox K. Unmet care needs in people living with advanced cancer: a systematic review. Support Care Cancer. 2016;08(8):3609–22. /01 2016.

    Article  Google Scholar 

  6. Rimmer B, Crowe L, Todd A, Sharp L. Assessing unmet needs in advanced cancer patients: a systematic review of the development, content, and quality of available instruments. J Cancer Surviv. 2022;2022/10/01(5):960–75.

    Article  Google Scholar 

  7. North AS, Carson L, Sharp L, Patterson J, Hamilton DW. The unmet needs of patients with advanced incurable head and neck cancer and their carers: a systematic review and meta-ethnography of qualitative data. Eur J Cancer Care. 2021/07/01 2021;30(4):e13474.

  8. Hart NH, Crawford-Williams F, Crichton M, et al. Unmet supportive care needs of people with advanced cancer and their caregivers: a systematic scoping review. Crit Rev Oncol/Hematol. 2022. /08/01/ 2022;176:103728.

    Article  PubMed  Google Scholar 

  9. Wang T, Molassiotis A, Chung BPM, Tan JY. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care Jul. 2018;23(1):96.

    Article  Google Scholar 

  10. Golant M, Zaleta AK, Ash-Lee S et al. ‘The Engaged Patient: The Cancer Support Community’s Comprehensive Model of Psychosocial Programs, Services, and Research’, in William Breitbart, and others, editors, Psycho-Oncology, 4 edn (2021; online edn, Oxford Academic, 1 Jan. 2021),

  11. United States Department of Agriculture (USDA). 2013 Rural-Urban Continuum Codes. USDA Economic Research Service. 2016.

  12. Zaleta AK, McManus S, Fortune EE et al. CancerSupportSource®-15+: development and evaluation of a short form of a distress screening program for cancer patients and survivors. Support Care Cancer. 2021/08/01 2021;29(8):4413–21.

  13. Buzaglo JS, Zaleta AK, McManus S, Golant M, Miller MF. CancerSupportSource®: validation of a revised multi-dimensional distress screening program for cancer patients and survivors. Support Care Cancer. 2020/01/01 2020;28(1):55–64.

  14. Miller MF, Mullins CD, Onukwugha E, Golant M, Buzaglo JS. Discriminatory power of a 25-item distress screening tool: a cross-sectional survey of 251 cancer survivors. Qual Life Res. 2014;2014/12/01(10):2855–63.

    Article  Google Scholar 

  15. Wang X, Wang N, Zhong L, et al. Prognostic value of depression and anxiety on breast cancer recurrence and mortality: a systematic review and meta-analysis of 282,203 patients. Mol Psychiatry Dec. 2020;25(12):3186–97.

    Article  Google Scholar 

  16. Mosher CE, Johnson C, Dickler M, Norton L, Massie MJ, DuHamel K. Living with Metastatic Breast Cancer: A Qualitative Analysis of Physical, Psychological, and Social Sequelae. The Breast Journal. 2013/05/01 2013;19(3):285–292.

  17. McClelland SI, Holland KJ, Griggs JJ. Quality of life and metastatic breast cancer: the role of body image, disease site, and time since diagnosis. Quality of Life Research. 2015/12/01 2015;24(12):2939–2943.

  18. Ginter AC. The day you lose your hope is the day you start to die: quality of life measured by young women with metastatic breast cancer. J Psychosocial Oncol. 2020;2020/07/03(4):418–34.

    Article  Google Scholar 

  19. Melhem SJ, Nabhani-Gebara S, Kayyali R. Latency of breast cancer stigma during survivorship and its influencing factors: a qualitative study. Original Research. Frontiers in Oncology. 2023-March-14. 2023;13.

  20. LeBlanc TW, Temel JS, Helft PR. How much time do I have? Communicating prognosis in the era of exceptional responders. Am Soc Clin Oncol Educat Book. 2018/05/23 2018;(38):787–94.

  21. Duggan KJ, Wiltshire J, Strutt R, et al. Palliative care and psychosocial care in metastatic non-small cell lung cancer: factors affecting utilisation of services and impact on patient survival. Support Care Cancer. 2019;2019/03/01(3):911–9.

    Article  Google Scholar 

  22. Ecclestone C, Chow R, Pulenzas N et al. Quality of life and symptom burden in patients with metastatic breast cancer. Support Care Cancer. 2016/09/01 2016;24(9):4035–4043. doi:10.1007/s00520-016-3217-z.

  23. Hird A, Wong J, Zhang L et al. Exploration of symptoms clusters within cancer patients with brain metastases using the Spitzer Quality of Life Index. Support Care Cancer. 2010/03/01 2010;18(3):335–342.

  24. Cardoso F, Wilking N, Bernardini R et al. A multi-stakeholder approach in optimising patients’ needs in the benefit assessment process of new metastatic breast cancer treatments. The Breast. 2020/08/01/ 2020;52:78–87. doi:

  25. Schandelmaier S, Conen K, von Elm E et al. Planning and reporting of quality-of-life outcomes in cancer trials. Annals Oncol. 2015/09/01/ 2015;26(9):1966–1973. doi:

  26. Keane D, Phillips G, Mitchell N, Connolly RM, Hegarty J. Improving quality of life and symptom experience in patients with metastatic breast cancer: a systematic review of supportive care interventions. Psycho-oncology. 2023/08/01 2023;32(8):1192–207.

  27. Beaton R, Pagdin-Friesen W, Robertson C, Vigar C, Watson H, Harris SR. Effects of Exercise Intervention on Persons with Metastatic Cancer: A Systematic Review. Physiotherapy Canada. 2009/07/01 2009;61(3):141–153.

  28. Barnes O, Wilson RL, Gonzalo-Encabo P, et al. The Effect of Exercise and Nutritional interventions on body composition in patients with Advanced or Metastatic Cancer: a systematic review. Nutrients. 2022;14(10).

  29. Gallicchio L, Tonorezos E, de Moor JS, et al. Evidence gaps in Cancer Survivorship Care: a Report from the 2019 National Cancer Institute Cancer Survivorship Workshop. J Natl Cancer Inst. 2021;113(9):1136–42.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Mollica MA, Tesauro G, Tonorezos ES, Jacobsen PB, Smith AW, Gallicchio L. Current state of funded National Institutes of Health grants focused on individuals living with advanced and metastatic cancers: a portfolio analysis. J Cancer Surv. 2021/06/01 2021;15(3):370–4.

  31. Mollica MA, Smith AW, Tonorezos E, et al. Survivorship for individuals living with Advanced and metastatic cancers: National Cancer Institute Meeting Report. J Natl Cancer Inst. 2022;114(4):489–95.

    Article  PubMed  Google Scholar 

  32. de Moor JS, Alfano CM, Kent EE, et al. Recommendations for Research and practice to Improve Work outcomes among Cancer survivors. J Natl Cancer Inst. 2018;110(10):1041–7.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Guo Y-J, Tang J, Li J-M, Zhu L-L, Xu J-S. Exploration of interventions to enhance return-to-work for cancer patients: a scoping review. Clin Rehabil. 2021;35(12):1674–93. 2021/12/01.

    Article  PubMed  Google Scholar 

  34. Tamminga SJ, Boer AGEMd, Verbeek JHAM, Frings-Dresen MHW. Return-to-work interventions integrated into cancer care: a systematic review. Occup Environ Med. 2010;67(9):639.

    Article  CAS  PubMed  Google Scholar 

  35. Lyons KD, Newman RM, Sullivan M, Pergolotti M, Braveman B, Cheville AL. Employment Concerns and Associated Impairments of Women Living With Advanced Breast Cancer. Arch Rehabil Res Clin Transl. 2019/06/01/ 2019;1(1):100004.

Download references


The article was prepared as part of some of the authors’ (MAM, LG, ET, KC) official duties as employees of the US Federal Government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute. PBJ worked on this project during his tenure in the Division of Cancer Control and Population Sciences, National Cancer Institute. He is now retired from federal service.


Funding for the Cancer Experience Registry was provided by Astellas Pharma, Bristol Myers Squibb, Genentech, Geron, GSK, Janssen Oncology, Merck, Novartis, Pfizer, Pharmacyclics, Seagen, Taiho Oncology, Takeda Oncology, AbbVie, Amgen, AstraZeneca, Bristol-Myers Squibb, Celgene, Eli Lilly and Company, EMD Serono, Genentech (a member of the Roche Group), GlaxoSmithKline, Janssen Pharmaceuticals, Jazz Pharmaceuticals, Novartis, Pfizer, Pharmacyclics, Seagen, and Takeda Pharmaceutical.

Author information

Authors and Affiliations



M.A.M, A.Z., L.G., K.C., R.B., E.T., P.J., M.M. were responsible for research conceptualization; M.M. conducted the analyses; R.B., M.A.M, L.G., and M.M. wrote the main manuscript text in collaboration with all authors; All authors reviewed the study design, results, and the manuscript.

Corresponding author

Correspondence to Melissa F. Miller.

Ethics declarations

Ethical approval

Ethical and Independent Review Services (E&I, Independence, MO) served as the IRB of record (Study #23044). All procedures were in accordance with the ethical standards of the institutional research committee for studies involving human participants and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all participants.

Competing interests

Dr. Zaleta reports conducting research in the past two years funded by: Astellas Pharma, Boston Scientific Foundation, Novartis, and Seagen; funding was received by Cancer Support Community. Dr. Miller reports institutional research grants from Astellas Pharma, BeiGene, Bristol Myers Squibb, Genentech, Geron, Gilead Sciences, GSK, Janssen Oncology, Merck, Novartis, Pfizer, Seagen, Taiho Oncology, and Takeda Oncology.

Additional information

Publisher’s Note

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

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Brick, R.S., Gallicchio, L., Mollica, M.A. et al. Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry. J Cancer Surviv (2024).

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: