Journal of Cancer Survivorship

, Volume 12, Issue 6, pp 835–842 | Cite as

Physical symptoms in long-term survivors of rare cancer

  • Nora K. Horick
  • Ariela Muzikansky
  • Hilda L. Gutierrez
  • Kristina L. Boyd
  • Dianne M. FinkelsteinEmail author



Advances in cancer detection and treatment have resulted in a growing population of long-term survivors, but even years after treatment has concluded, many survivors report physical symptoms that interfere with daily living. While there are studies of late effects following common cancers, less is known about these complications in rare cancers. This study focuses on the physical symptoms reported by long-term survivors enrolled in the NIH-sponsored Rare Cancer Genetics Registry.


The Rotterdam Symptom Checklist-Modified was administered to evaluate the severity of physical symptoms commonly reported by long-term cancer survivors. Logistic regression was used to assess association between symptoms and demographic and clinical factors.


In 309 subjects with a median time of 7.6 years from a diagnosis of one or more rare cancers, the median number of symptoms present per participant was 7. The most prevalent symptom reported was tiredness/lack of energy, which was present/very bothersome in 70%/25% of registrants. Women, non-whites, current smokers, and upper GI cancer survivors are particularly affected. Overall, symptom prevalence was similar across rare cancer types, time since diagnosis, and type of treatment.


Rare cancer survivors continue to experience troublesome symptoms many years after diagnosis, regardless of cancer type or treatment modality.

Implications for Cancer Survivors

There is a need for continued emphasis on smoking cessation in cancer survivors as well as enhanced monitoring of long-term complications in female, non-white, and upper GI cancer survivors.


Quality of life Rotterdam symptom checklist-modified Rare cancer Long-term survivors 



The authors would like to gratefully acknowledge the Rare Cancer Genetics Registry participants and project managers, as well as the Principal Investigators of the Rare Cancer Genetics Registry: Susan Domchek (University of Pennsylvania), Claudine Isaacs (Georgetown University), Jan Lowery and Betsy Risendal (University of Colorado Denver), Patricia Moorman (Duke University), Kala Visvanathan (Johns Hopkins University).

Authors’ contributions

DMF concept; NKH, DMF data analysis; NKH, AM, DMF manuscript writing; HLG, KLB recruitment and development of idea and tools; AM, HLG, KLB manuscript review.


This study was funded by the U.S. National Institutes of Health (grants RC1 CA144706 and R01 CA160233).

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11764_2018_721_MOESM1_ESM.pdf (63 kb)
Online Resource 1 (PDF 62 kb)
11764_2018_721_MOESM2_ESM.pdf (36 kb)
Online Resource 2 (PDF 36 kb)


  1. 1.
    Welch HG, Schwartz LM, Woloshin S. Are increasing 5-year survival rates evidence of success against cancer? JAMA. 2000;283(22):2975–8.CrossRefGoogle Scholar
  2. 2.
    Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the “silver tsunami”: prevalence trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomark Prev. 2016;25(7):1029–36. Scholar
  3. 3.
    Mayer DK, Nasso SF, Earp JA. Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA. Lancet Oncol. 2017;18(1):e11–e8. Scholar
  4. 4.
    Pachman DR, Barton DL, Swetz KM, Loprinzi CL. Troublesome symptoms in cancer survivors: fatigue, insomnia, neuropathy, and pain. J Clin Oncol. 2012;30(30):3687–96. Scholar
  5. 5.
    Skerman HK, Yates PM, Battitutta D. Cancer-related symptom clusters for symptom management in outpatients after commencing adjuvant chemotherapy, at 6 months, and 12 months. Support Care Cancer. 2012;20(1):95–105. Scholar
  6. 6.
    Tian Y, Schofield PE, Gough K, Mann GB. Profile and predictors of long-term morbidity in breast cancer survivors. Ann Surg Oncol. 2013;20(11):3453–60. Scholar
  7. 7.
    Yang P, Cheville AL, Wampfler JA, Garces YI, Jatoi A, Clark MM, et al. Quality of life and symptom burden among long-term lung cancer survivors. J Thorac Oncol. 2012;7(1):64–70. Scholar
  8. 8.
    Ganz PA. Late effects of cancer and its treatment. Semin Oncol Nurs. 2001;17(4):241–8.CrossRefGoogle Scholar
  9. 9.
    de Haes JC, van Knippenberg FC, Neijt JP. Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer. 1990;62(6):1034–8.CrossRefGoogle Scholar
  10. 10.
    Stein KD, Denniston M, Baker F, Dent M, Hann DM, Bushhouse S, et al. Validation of a modified Rotterdam symptom checklist for use with cancer patients in the United States. J Pain Symptom Manag. 2003;26(5):975–89.CrossRefGoogle Scholar
  11. 11.
    Meyerowitz BE, Desmond KA, Rowland JH, Wyatt GE, Ganz PA. Sexuality following breast cancer. J Sex Marital Ther. 1999;25(3):237–50. Scholar
  12. 12.
    Syrjala KL, Roth-Roemer SL, Abrams JR, Scanlan JM, Chapko MK, Visser S, et al. Prevalence and predictors of sexual dysfunction in long-term survivors of marrow transplantation. J Clin Oncol. 1998;16(9):3148–57. Scholar
  13. 13.
    Langendijk JA, Doornaert P, Verdonck-de Leeuw IM, Leemans CR, Aaronson NK, Slotman BJ. Impact of late treatment-related toxicity on quality of life among patients with head and neck cancer treated with radiotherapy. J Clin Oncol. 2008;26(22):3770–6. Scholar
  14. 14.
    Head MDA, Neck Cancer Symptom Working G, Kamal M, Rosenthal DI, Volpe S, Goepfert RP, et al. Patient reported dry mouth: instrument comparison and model performance for correlation with quality of life in head and neck cancer survivors. Radiother Oncol. 2018;126(1):75–80. Scholar
  15. 15.
    Allum WH, Bonavina L, Cassivi SD, Cuesta MA, Dong ZM, Felix VN, et al. Surgical treatments for esophageal cancers. Ann N Y Acad Sci. 2014;1325:242–68. Scholar
  16. 16.
    Bouras G, Markar SR, Burns EM, Huddy JR, Bottle A, Athanasiou T, et al. The psychological impact of symptoms related to esophagogastric cancer resection presenting in primary care: a national linked database study. Eur J Surg Oncol. 2017;43(2):454–60. Scholar
  17. 17.
    Mustafa Ali M, Moeller M, Rybicki L, Moore HCF. Long-term peripheral neuropathy symptoms in breast cancer survivors. Breast Cancer Res Treat. 2017;166(2):519–26. Scholar
  18. 18.
    Hwang IC, Yun YH, Kim YW, Ryu KW, Kim YA, Kim S, et al. Factors related to clinically relevant fatigue in disease-free stomach cancer survivors and expectation-outcome consistency. Support Care Cancer. 2014;22(6):1453–60. Scholar
  19. 19.
    Thong MSY, Mols F, van de Poll-Franse LV, Sprangers MAG, van der Rijt CCD, Barsevick AM, et al. Identifying the subtypes of cancer-related fatigue: results from the population-based PROFILES registry. J Cancer Surviv. 2018;12(1):38–46. Scholar
  20. 20.
    Kim IR, Kim SH, Ok ON, Kim SH, Lee S, Choi E, et al. Sexual problems in male vs. female non-Hodgkin lymphoma survivors: prevalence, correlates, and associations with health-related quality of life. Ann Hematol. 2017;96(5):739–47. Scholar
  21. 21.
    Blinder VS, Griggs JJ. Health disparities and the cancer survivor. Semin Oncol. 2013;40(6):796–803. Scholar
  22. 22.
    Blanchard CM, Courneya KS, Stein K, American Cancer Society’s SCS, II. Cancer survivors’ adherence to lifestyle behavior recommendations and associations with health-related quality of life: results from the American Cancer Society’s SCS-II. J Clin Oncol. 2008;26(13):2198–204. Scholar
  23. 23.
    Ditre JW, Gonzalez BD, Simmons VN, Faul LA, Brandon TH, Jacobsen PB. Associations between pain and current smoking status among cancer patients. Pain. 2011;152(1):60–5. Scholar
  24. 24.
    Kushi LH, Doyle C, McCullough M, Rock CL, Demark-Wahnefried W, Bandera EV, et al. American Cancer Society guidelines on nutrition and physical activity for cancer prevention: reducing the risk of cancer with healthy food choices and physical activity. CA Cancer J Clin. 2012;62(1):30–67. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Massachusetts General Hospital Biostatistics CenterBostonUSA
  2. 2.Department of BiostatisticsHarvard TH Chan School of Public HealthBostonUSA

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