Supportive Care in Cancer

, Volume 26, Issue 6, pp 2005–2013 | Cite as

Living with lymphoedema—the perspective of cancer patients: a qualitative study

  • Ángela Río-González
  • Francisco Molina-RuedaEmail author
  • Domingo Palacios-Ceña
  • Isabel M. Alguacil-Diego
Original Article



The aim of this study was to describe the lived experience of lymphoedema and the barriers faced by cancer sufferers receiving physiotherapy outpatient treatment.


A qualitative, phenomenological study was performed. Purposeful sampling method was used. Data collection methods included unstructured and semi-structured interviews and researcher field notes. A thematic analysis was used. The study was conducted following the Consolidated Criteria for Reporting Qualitative Research guidelines.


Eleven patients (62.18 ± 10.14 years) (90.91% women) participated. One theme was identified with different subgroups. The main theme ‘Living a life with multiple barriers’—formed by the subthemes ‘Discovering physical and psychological barriers’, ‘Searching information’, ‘Building relationships’ and ‘Controlling expenses’—displays the daily difficulties they must face in areas such as work. The patients reported that lymphoedema is a constant emotional and physical challenge. They need to adapt their lives to their new situation, learning how to manage the lymphoedema.


Patients considered lymphoedema as a clinical situation with multiple barriers and they found that it does alter their quality of life. These results can be applied in onco-haematology units to develop specific protocols for customers.


Lymphoedema Medical oncology Patients Physical therapy Qualitative research 


Compliance with ethical standards

We have full control of all primary data and we agree to allow the journal to review the data if requested.

Conflict of interest

The authors declare that they have no conflict of interest.

Research involving human participants and/or animals

The study was approved by the Rey Juan Carlos University Clinical Research Ethics Committee (internal code 180120160116) and performed in accordance with the Declaration of Helsinki.

Informed consent

Informed consent was obtained from all participants included in the study. Data were treated anonymously and confidentially according to the Spanish Personal Data Protection Act and the Biomedical Research Act.


  1. 1.
    Brennan M, DePompolo RW, Garden F (1996) Focused review: postmastectomy lymphedema. Arch Phys Med Rehabil 77(3):S74–S80. CrossRefPubMedGoogle Scholar
  2. 2.
    Casley-Smith JR (1995) Alterations of untreated lymphedema and its grades over time. Lymphology 28(4):174–185PubMedGoogle Scholar
  3. 3.
    Garza R, Skoracki R, Hock K, Povoski SP (2017) A comprehensive overview on the surgical management of secondary lymphedema of the upper and lower extremities related to prior oncologic therapies. BMC Cancer 17(1):468. CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Kuroda K, Yamamoto Y, Yanagisawa M, Kawata A, Akiba N, Suzuki K, Naritaka K (2017) Risk factors and a prediction model for lower limb lymphedema following lymphadenectomy in gynecologic cancer: a hospital-based retrospective cohort study. BMC Womens Health 17(1):50. CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    DiSipio T, Rye S, Newman B, Hayes S (2013) Incidence of unilateral arm lymphoedema after breast cancer: a systematic review and meta-analysis. Lancet Oncol 14(6):500–515. CrossRefPubMedGoogle Scholar
  6. 6.
    Stuiver M, Tusscher MR, Agasi-Idenburg CS, Lucas C, Aaronson N, Bossuyt PM (2015) Conservative interventions for preventing clinically detectable upper-limb lymphoedema in patients who are at risk of developing lymphoedema after breast cancer therapy. Cochrane Database Syst Rev (2).
  7. 7.
    Vassard D, Olsen MH, Zinckernagel L, Vibe-Petersen J, Dalton SO, Johansen C (2010) Psychological consequences of lymphoedema associated with breast cancer: a prospective cohort study. Eur J Cancer 46(18):3211–3218. CrossRefPubMedGoogle Scholar
  8. 8.
    Gjorup CA, Groenvold M, Hendel HW, Dahlstroem K, Drzewiecki KT, Klausen TW, Hölmich LR (2017) Health-related quality of life in melanoma patients: impact of melanoma-related limb lymphoedema. Eur J Cancer 85:122–132. CrossRefPubMedGoogle Scholar
  9. 9.
    Yost KJ, Cheville AL, Al-Hilli MM, Mariani A, Barrette BA, McGree ME, Weaver AL, Dowdy SC (2014) Lymphedema after surgery for endometrial cancer: prevalence, risk factors, and quality of life. Obstet Gynecol Int 124(201):307Google Scholar
  10. 10.
    Ridner SH, Rhoten BA, Radina ME, Adair M, Bush-Foster S, Sinclair V (2016) Breast cancer survivors’ perspectives of critical lymphedema self-care support needs. Support Care Cancer 24(6):2743–2750. CrossRefPubMedGoogle Scholar
  11. 11.
    Cal A, Bahar Z (2016) Women’s barriers to prevention of lymphedema after breast surgery and home care needs: a qualitative study. Cancer Nurs 39(6):E17–E25. CrossRefPubMedGoogle Scholar
  12. 12.
    Jeffs E, Purushotham A (2016) The prevalence of lymphoedema in women who attended an information and exercise class to reduce the risk of breast cancer-related upper limb lymphoedema. SpringerPlus 5(1):21. CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Meiklejohn JA, Heesch KC, Janda M, Hayes SC (2013) How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia. Support Care Cancer 21(2):459–466. CrossRefPubMedGoogle Scholar
  14. 14.
    Viehoff PB, Gielink PD, Damstra RJ, Heerkens YF, van Ravensberg DC, Neumann MH (2015) Functioning in lymphedema from the patients’ perspective using the international classification of functioning, disability and health (ICF) as a reference. Acta Oncol 54(3):411–421. CrossRefPubMedGoogle Scholar
  15. 15.
    Hamilton R, Thomas R (2016) Renegotiating hope while living with lymphoedema after cancer: a qualitative study. Eur J Cancer Care 25(5):822–831. CrossRefGoogle Scholar
  16. 16.
    Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19(6):349–357. CrossRefGoogle Scholar
  17. 17.
    Carpenter C, Suto M (2008) Qualitative research for occupational and physical therapists: a practical guide. Black-Well Publishing, OxfordGoogle Scholar
  18. 18.
    Pope C, Mays N (2006) Qualitative research in health care. Blackwell Publishing, Oxford. CrossRefGoogle Scholar
  19. 19.
    Curry LA, Nembhard IM, Bradley EH (2009) Qualitative and mixed methods provide unique contributions to outcomes research. Circulation 119(10):1442–1452. CrossRefPubMedGoogle Scholar
  20. 20.
    Norlyk A, Harder I (2010) What makes a phenomenological study phenomenological? An analysis of peer-reviewed empirical nursing studies. Qual Health Res 20(3):420–431. CrossRefPubMedGoogle Scholar
  21. 21.
    Shenton AK (2004) Strategies for ensuring trustworthiness in qualitative research projects. Educ Inform 22(2):63–75. CrossRefGoogle Scholar
  22. 22.
    Bakar Y, Tuğral A (2017) Lower extremity lymphedema management after gynecologic cancer surgery: a review of current management strategies. Ann Vasc Surg 44:442–450. CrossRefPubMedGoogle Scholar
  23. 23.
    International Society of Lymphology (2013) The diagnosis and treatment of peripheral lymphedema: 2016 Consensus Document of the International Society of Lymphology. Lymphology 49(4):170–184Google Scholar
  24. 24.
    Földi M, Földi E, Strößenreuther R, Kubik S (2012) Földi’s textbook of lymphology: for physicians and lymphedema therapists. Elsevier-Health Sciences Division, United States of AmericaGoogle Scholar
  25. 25.
    Teddlie C, Yu F (2007) Mixed method sampling: a typology with examples. J Mix Methods Res 1:77–100CrossRefGoogle Scholar
  26. 26.
    Arias-Cuadrado A, Álvarez-Vázquez MJ, Martín-Mourelle R, Jiménez CVD (2010) Clínica, clasificación y estadiaje del linfedema. Rehabilitación 44:29–34. CrossRefGoogle Scholar
  27. 27.
    Lee KT, Bang SI, Pyon JK, Hwang JH, Mun GH (2017) Method of breast reconstruction and the development of lymphoedema. Br J Surg 104(3):230–237. CrossRefPubMedGoogle Scholar
  28. 28.
    Civelek GM, Aypak C, Turedi O (2016) Knowledge of primary care physicians about breast-cancer-related lymphedema: Turkish perspective. J Cancer Educ 31(4):687–692. CrossRefGoogle Scholar
  29. 29.
    Malterud K, Dirkt V, Dorrit A (2015) Sample size in qualitative interview studies: guided by information power. Qual Health Res 26(13):1–8. CrossRefGoogle Scholar
  30. 30.
    Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. CrossRefGoogle Scholar
  31. 31.
    Saldaña J (2012) The coding manual for qualitative researchers. Sage Publications, Thousand OaksGoogle Scholar
  32. 32.
    Lincoln YS, Guba EG (1985) Naturalistic inquiry. Sage Publications, Newbury ParkCrossRefGoogle Scholar
  33. 33.
    World Medical Association (2001) World Medical Association Declaration of Helsinki. Ethical principles for medical research involving human subjects. Bull World Health Organ 79(4):373–374PubMedCentralGoogle Scholar
  34. 34.
    Spanish Government Bulletin (1999) Personal Data Protection Act. Accessed 28 Nov 2016
  35. 35.
    Spanish Government Bulletin (2007) Biomedical Research Act. 2007. Accessed 28 Nov 2016
  36. 36.
    Cohen DJ, Crabtree BF (2008) Evaluative criteria for qualitative research in health care: controversies and recommendations. Ann Fam Med 6(4):331–e339. CrossRefPubMedPubMedCentralGoogle Scholar
  37. 37.
    Lam R, Wallace A, Burbidge B, Franks P, Moffatt C (2006) Experiences of patients with lymphoedema. J Lymphoedema 1(1):16–21Google Scholar
  38. 38.
    Beesley VL, Rowlands IJ, Hayes SC, Janda M, O’Rourke P, Marquart L, Quinn MA, Spurdle AB, Obermair A, Brand A, Oehler MK, Leung Y, Mcquire L, Webb PM (2015) Incidence, risk factors and estimates of a woman’s risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer. Gynecol Oncol 136(1):87–93. CrossRefPubMedGoogle Scholar
  39. 39.
    Burckhardt M, Belzner M, Berg A, Fleischer S (2014) Living with breast cancer-related lymphedema: a synthesis of qualitative research. Oncol Nurs Forum 41(4):E220–E237. CrossRefPubMedGoogle Scholar
  40. 40.
    Winch CJ, Sherman KA, Smith KM, Koelmeyer LA, Mackie H, Boyages J (2016) “You’re naked, you’re vulnerable”: sexual well-being and body image of women with lower limb lymphedema. Body Image 18:123–134. CrossRefPubMedGoogle Scholar
  41. 41.
    Carter BJ (1997) Women’s experiences of lymphedema. Oncol Nurs Forum 24(5):875–882PubMedGoogle Scholar
  42. 42.
    Johansson K, Holmström H, Nilsson I, Ingvar C, Albertsson M, Ekdhal C (2003) Breast cancer patients’ experiences of lymphoedema. Scand J Caring Sci 17(1):35–42. CrossRefPubMedGoogle Scholar
  43. 43.
    Fu MR, Ridner SH, SH H, Stewart BR, Cormier JN, Armer JM (2013) Psychosocial impact of lymphedema: a systematic review of literature from 2004 to 2011. Psychooncology 22(7):1466–1484CrossRefGoogle Scholar
  44. 44.
    Morgan PA, Franks PJ, Moffatt CJ (2005) Health-related quality of life with lymphoedema: a review of the literature. Int Wound J 2(1):47–62. CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.School of Sport Science and Physical TherapyUniversidad Europea de MadridMadridSpain
  2. 2.Department of Physical Therapy, Occupational Therapy, Rehabilitation and Physical MedicineUniversidad Rey Juan CarlosAlcorcónSpain

Personalised recommendations