Post-Breast Cancer Lymphedema: Understanding Women's Knowledge of Their Condition

M. Elise Radina

Jane Armer

Scott D. Culbertson

Julie M. Dusold

ONF 2004, 31(1), 97-104. DOI: 10.1188/04.ONF.97-104

Purpose/Objectives: To investigate chronic condition representations and treatment choices among women with post-breast cancer lymphedema (LE) to understand their receipt and use of accurate medical information.

Design: Qualitative, template analysis.

Setting: Midsized midwestern city and surrounding rural areas.

Sample: 18 Caucasian women aged 37-87 years (XM = 58.8 years) with LE.

Methods: Telephone and face-to-face interviews, lasting 45-60 minutes, were conducted by research students and graduate nursing students. Interviews were audiotaped, professionally transcribed, and verified for transcription accuracy. Self-regulation theory as a template was applied to (a) understand participants' use of health information to cope with LE and (b) evaluate the accuracy of participants' health information that may have influenced participants' abilities to make appropriate prevention or treatment choices.

Main Research Variables: Participants' illness representations and coping strategies.

Findings: Participants were aware of the fundamental cause of their LE—breast cancer treatment. They also were conscious of other causes of symptom onset. These causes are supported by existing empirical evidence. Participants' treatment choices were consistent (e.g., use of compression treatment, massage, elevation, pumps, therapists and therapy centers, and positive attitude and faith) and inconsistent (e.g., effectiveness of exercise and medication in management of LE) with empirical evidence.

Conclusions: Future research and practice should target the role of exercise as a cause of LE and as a treatment option, investigate allergic reactions as a possible catalyst of LE symptoms, work to improve diagnosis of LE and patient education, and examine the effectiveness of medications as a treatment method.

Implications for Nursing: Review of LE risk factors in the postoperative period and continued assessment and education are vital to a comprehensive approach to post-breast cancer LE care.

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    Armer, J.M. (2000). [Patient perceptions of chronic illness management]. Unpublished raw study data.

    Armer, J.M. (2002). Living with lymphedema: A case study of secondary lymphedema in an elderly breast cancer survivor. Lymphology, 35(Suppl.), 203-207.

    Armer, J.M., Conn, V.S., Rogers, W., Clawson, J., & Tripp-Reimer, T. (1998, April). The lived experience of managing chronic illness: Ethnographic research utilizing Leventhal's common sense model. Paper presented at the Midwestern Nursing Research Society, Columbus, OH.

    Bertelli, G., Venturini, M., Forno, G., Macchiavello, F., & Dini, D. (1992). An analysis of prognostic factors in response to conservative treatment of postmastectomy lymphedema. Surgical Gynecology and Obstetrics, 175, 455-460.

    Board, J., & Harlow, W. (2002). Lympoedema 3: The available treatments for lymphoedema. British Journal of Nursing, 11, 438, 440-442, 444.

    Brennan, M.J., & Miller, L.T (1998). Overview of treatment options and review of the current role and use of compression garments, intermittent pumps, and exercise in the management of lymphedema. Cancer, 83, 2821-2827.

    Bunce, I.H., Mirolo, B.R., Hennessy, J.M., Ward, L.C., & Jones, L.C. (1994). Post-mastectomy lymphoedema treatment and measurement. Medical Journal of Australia, 161, 125-128.

    Casley-Smith, J.R. (1986). High-protein oedemas and the benzopyrenes. Philadelphia: Lippincott.

    Casley-Smith, J.R. (1992). Modern treatment of lymphoedema. Modern Medicine of Australia, 5(1), 70-83.

    Casley-Smith, J.R. (1996). Alterations of untreated lymphedema and its grades overtime. Lymphology, 20, 175-183.

    Casley-Smith, J.R., Boris, M., Weindorf, S., & Lasinski, B. (1998). Treatment for lymphedema of the arm—The Casley-Smith Method: A noninvasive method produces continued reduction. Cancer, 83, 2843-2860.

    Casley-Smith, J.R., Morgan, R.G., & Piller, N.B. (1993). Treatment of lymphedema of the arms and legs with 5, 6-benzo-[a]-pyrone. New England Journal of Medicine, 329, 1158-1163.

    Chu, K.C., Tarone, R.E., Kessler, L.G., Ries, L.A., Hankey, B.F., Miller, B.A., et al. (1996). Recent trends in U.S. breast cancer incidence, survival, and mortality rates. Journal of the National Cancer Institute, 88, 1571-1579.

    Coward, D.D. (1999). Lymphedema prevention and management knowledge in women treated for breast cancer. Oncology Nursing Forum, 26, 1047-1053.

    Crabtree, B.F., & Miller, W.L. (1999). Using codes and code manuals: A template organizing style of interpretation. In B.F. Crabtree & W.L. Miller (Eds.)Doing qualitative research (2nd ed., pp. 93-109). Thousand Oaks, CA: Sage.

    Davis, S. (1998). Lymphedema following breast cancer treatment. Radiologic Technology, 70(1), 42-56.

    Emerson, R.M., Fretz, R. I., & Shaw, L.L. (1995). Writing ethnographic fieldnotes. Chicago: University of Chicago Press.

    Földi, E. (1998). The treatment of lymphedema. Cancer, 83, 2833-2834.

    Ganz, P.A. (1999). The quality of life after breast cancer—Solving the problem of lymphedema. New England Journal of Medicine, 340, 383-385.

    Gordon, P.A., Feldman, D., Crose, R., Schoen, E., Griffing, G., & Shankar, J. (2002). The role of religious beliefs in coping with chronic illness. Counseling and Values, 46, 162-174.

    Jayne, R.L., & Rankin, S.H. (2001). Application of Leventhal's Self-Regulation Model to Chinese immigrants with type 2 diabetes. Journal of Nursing Scholarship, 33, 53-59.

    Johnson, G., Kupper, C., Farrar, D.J., & Swallow, R.T. (1982). Graded compression stockings. Archives of Surgery, 117, 69-72.

    Johnson, J.E. (1999). Self-regulation theory and coping with physical illness. Research in Nursing and Health, 22, 435-448.

    Johnson, J.E., Fieler, V.K., Wlasowicz, G.S., Mitchell, M.L., & Jones, L.S. (1997). The effects of nursing care guided by self-regulation theory on coping with radiation therapy. Oncology Nursing Forum, 24, 1041-1050.

    Klose Norton Training and Consulting, LLC. (2002). Guidelines for patients and predisposed individuals. Retrieved November 25, 2002, from

    Kocak, Z., & Overgaard, J. (2000). Risk factors of arm lymphedema in breast cancer patients. Acta Oncologica, 39, 389-392.

    Koenig, H.G., Hays, J.C., Larson, D.B., George, L.K., Cohen, H.J., McCullough, M.E., et al. (1999). Does religious attendance prolong survival? A six-year follow-up study of 3,968 older adults. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 54A(1), M370-M376.

    Koenig, H.G., & Larson, D.B. (2001). Religion and mental health: Evidence for an association. International Review of Psychiatry, 13(2), 67-78.

    Leduc, O., Bourgeois, P., Peeters, A., & Leduc, A. (1990). Bandages: Scintigraphic demonstration of its efficacy on colloidal proteins reabsorption during muscle activity. In M. Nishi, S. Uchino, & S. Yabuki (Eds.)Progress in Lymphology: Proceedings of the XIIth Congress of the International Society of Lymphology, Tokyo, Kyoto, Japan, 27 August—2 September 1989 (Vol. 12, pp. 421-423). New York: Excerpta Medica.

    Leventhal, H., & Johnson, J.E. (1983). Laboratory and field experimentation: Development of a theory of self-regulation. In P.J. Woodridge, M.H. Schmitt, J.K. Skipper, Jr., & R.C. Leonard (Eds.)Behavioral science and nursing theory (pp. 189-262). St. Louis, MO: Mosby.

    Leventhal, H., Leventhal, E.A., & Schaefer, P.M. (1992). Vigilant coping and health behavior. In M.G. Ory, R.P. Abeles, & P.D. Lipman (Eds.)Aging, health, and behavior (pp. 109-140). Newbury Park, CA: Sage.

    Lockhart, J.S. (1999). Case in point. Oncology Nursing Forum, 26, 507-509.

    Logan, V.B. (1995). Incidence and prevalence of lymphoedema: A literature review. Journal of Clinical Nursing, 4, 213-219.

    Loudon, L., & Petrek, J. (2000). Lymphedema in women treated for breast cancer. Cancer Practice, 8, 65-71.

    Lymphatic Research Foundation. (2002). What is lymphedema? Retrieved November 25, 2002, from

    Lymphology Association of North America. (2002). News and what's new. Retrieved November 25, 2002, from

    Mortimer, P.S. (1990). Investigation and management of lymphoedema. Vascular Medicine Review, 1(1), 1-20.

    Mortimer, P.S. (1995). Managing lymphoedema. Clinical Experimental Dermatology, 20, 98-106.

    Musick, M.A., Koenig, H.G., Hays, J.C., & Cohen, H.J. (1998). Religious activity and depression among community-dwelling elderly persons with cancer: The moderating effect of race. Journal of Gerontology: Social Sciences, 53B(4), S218-S227.

    National Cancer Institute. (2002). Lymphedema [PDQ]. Retrieved December 2, 2002, from

    National Lymphedema Network. (2002a). Lymphedema: A brief overview. Retrieved November 25, 2002, from

    National Lymphedema Network. (2002b). Resource guide: Treatment centers. Retrieved November 25, 2002, from

    Olszewski, W.L. (1991). Clinical picture of lymphedema. In W. L. Olszewski (Ed.)Lymph stasis: Pathophysiology, diagnosis, and treatment (pp. 347-377). Boca Raton, FL: CRC Press.

    Paskett, E.D., & Stark, N. (2000). Lymphedema: Knowledge, treatment, and impact among breast cancer survivors. Breast Journal, 6, 373-378.

    Passik, S., & McDonald, M. (1998). Psychosocial aspects of upper extremity lymphedema in women treated for breast carcinoma. Cancer, 83, 2817-2820.

    Passik, S., Newman, M., Brennan, M., & Holland, J. (1993). Psychiatric consultation for women undergoing rehabilitation for upper-extremity lymphedema following breast cancer. Journal of Pain and Symptom Management, 8, 226-233.

    Potterton, D. (1998). Clinical update: CD physiotherapy is highly effective for lymphedema. Therapy Weekly, 25(13), 12-13.

    Radina, M.E., & Armer, J.M. (2001). Post-breast cancer lymphedema and the family: A qualitative investigation of families coping with chronic illness. Journal of Family Nursing, 7, 281-299.

    Ridner, S.H. (2002). Breast cancer lymphedema: Pathophysiology and risk reduction guidelines. Oncology Nursing Forum, 29, 1285-1293.

    Rinehart-Ayers, M.E. (1998). Conservative approaches to lymphedema treatment. Cancer, 83, 2828-2832.

    Romero, R. (1999). Lymphedema and the nurse practitioner. Nurse Practitioner Forum, 10, 159-164.

    Runowicz, C.D. (1998). Lymphedema: Patient and provider education: Current status and future trends. Cancer, 83, 2874-2876.

    Runowicz, C.D., Passik, S.D., Hann, D., Berson, A., Chang, H., Makar, K., et al. (1998). Workgroup II: Patient education—Pre- and post-treatment. Cancer, 83, 2880-2881.

    Savage, R.C. (1985). The surgical management of lymphedema [Review]. Surgical Gynecology and Obstetrics, 160, 283-290.

    Sebern, M.D. (1996). Explication of the construct of shared care and the prevention of pressure ulcers in home health care. Research in Nursing and Health, 19, 183-192.

    Thiadens, S.R.J., Armer, J.M., & Porock, D. (2002). NLN preliminary statistical analysis of survey data on lymphedema. National Lymphedema Network, 14(1), 5-6, 8.

    Thiadens, S.R.J., & Cole, M.D. (1996, July-September). Question corner. Retrieved November 25, 2002, from

    Whitman, M., & McDaniel, R.W. (1993). Preventing lymphedema: An unwelcome sequel to breast cancer. Nursing, 23(12), 36-39.

    Woods, M. (1993). Patient's perceptions of breast cancer-related lymphedema. European Journal of Cancer Care, 2, 125-128.