Factors Associated With Fear of Lymphedema After Treatment for Breast Cancer

Lauren S. Jammallo

Cynthia L. Miller

Nora K. Horick

Melissa N. Skolny

Jean O'Toole

Michelle C. Specht

Alphonse G. Taghian

lymphedema, breast cancer, fear, Perometer, quality of life
ONF 2014, 41(5), 473-483. DOI: 10.1188/14.ONF.473-483

Purpose/Objectives: To identify demographic and treatment characteristics associated with postoperative fear of lymphedema.

Design: Prospective cohort study.

Setting: Outpatient breast clinic at a comprehensive cancer center in the northeastern United States.

Sample: 324 patients undergoing treatment for unilateral breast cancer.

Methods: Women with breast cancer were prospectively screened for lymphedema (relative volume change of 10% or greater) preoperatively and every three to eight months postoperatively via Perometer arm volume measurements. Fear was simultaneously evaluated via questionnaire. Multivariate linear mixed-effects regression models were used to identify factors associated with mean postoperative fear score and to plot the average fear score over time within axillary surgery type subgroups.

Main Research Variables: Postoperative fear of lymphedema.

Findings: Higher preoperative fear score (p < 0.0001), younger age at diagnosis (p = 0.0038), and axillary lymph node dissection (ALND) (p < 0.0001) were significantly associated with higher mean postoperative fear score. The average fear score changed nonlinearly over time (p < 0.0001), decreasing from preoperative to 24 months postoperative and leveling thereafter.

Conclusions: Preoperative fear, younger age at diagnosis, and ALND may contribute to postoperative fear of lymphedema.

Implications for Nursing: Individualized education that begins preoperatively, continues throughout treatment, and is re-emphasized 24 months postoperatively may help minimize fear of lymphedema.

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    Ahmed, R. L., Prizment, A., Lazovich, D., Schmitz, K. H., & Folsom, A. R. (2008). Lymphedema and quality of life in breast cancer survivors: The Iowa Women's Health Study. Journal of Clinical Oncology, 26, 5689-5696. doi:10.1200/JCO.2008.16.4731
    Ahmed, R. L., Thomas, W., Yee, D., & Schmitz, K. H. (2006). Randomized controlled trial of weight training and lymphedema in breast cancer survivors. Journal of Clinical Oncology, 24, 2765-2772. doi:10.1200/JCO.2005.03.6749
    Ancukiewicz, M., Russell, T. A., Otoole, J., Specht, M., Singer, M., Kelada, A., … Taghian, A. G. (2011). Standardized method for quantification of developing lymphedema in patients treated for breast cancer. International Journal of Radiation Oncology, Biology, Physics, 79, 1436-1443. doi:10.1016/j.ijrobp.2010.01.001
    Armer, J. M., Radina, M. E., Porock, D., & Culbertson, S. D. (2003). Predicting breast cancer-related lymphedema using self-reported symptoms. Nursing Research, 52, 370-379.
    Armer, J. M., & Stewart, B. R. (2010). Post-breast cancer lymphedema: Incidence increases from 12 to 30 to 60 months. Lymphology, 43, 118-127.
    Ashikaga, T., Krag, D. N., Land, S. R., Julian, T. B., Anderson, S. J., Brown, A. M., … Wolmark, N. (2010). Morbidity results from the NSABP B-32 trial comparing sentinel lymph node dissection versus axillary dissection. Journal of Surgical Oncology, 102, 111-118. doi:10.1002/jso.21535
    Beaton, D. E., Katz, J. N., Fossel, A. H., Wright, J. G., Tarasuk, V., & Bombardier, C. (2001). Measuring the whole or the parts? Validity, reliability, and responsiveness of the Disabilities of the Arm, Shoulder and Hand outcome measure in different regions of the upper extremity. Journal of Hand Therapy, 14, 128-146.
    Bevilacqua, J. L., Kattan, M. W., Changhong, Y., Koifman, S., Mattos, I. E., Koifman, R. J., & Bergmann, A. (2012). Nomograms for predicting the risk of arm lymphedema after axillary dissection in breast cancer. Annals of Surgical Oncology, 19, 2580-2589. doi:10.1245/s10434-012-2290-x
    Bicego, D., Brown, K., Ruddick, M., Storey, D., Wong, C., & Harris, S. R. (2009). Effects of exercise on quality of life in women living with breast cancer: A systematic review. Breast Journal, 15, 45-51.
    Bosompra, K., Ashikaga, T., O'Brien, P. J., Nelson, L., Skelly, J., & Beatty, D. J. (2002). Knowledge about preventing and managing lymphedema: A survey of recently diagnosed and treated breast cancer patients. Patient Education and Counseling, 47, 155-163.
    Cemal, Y., Pusic, A., & Mehrara, B. J. (2011). Preventative measures for lymphedema: Separating fact from fiction. Journal of the American College of Surgeons, 213, 543-551. doi:10.1016/j.jamcollsurg.2011.07.001
    Chachaj, A., Malyszczak, K., Pyszel, K., Lukas, J., Tarkowski, R., Pudelko, M., … Szuba, A. (2010). Physical and psychological impairments of women with upper limb lymphedema following breast cancer treatment. Psycho-Oncology, 19, 299-305. doi:10.1002/pon.1573
    Cheema, B., Gaul, C. A., Lane, K., & Fiatarone Singh, M. A. (2008). Progressive resistance training in breast cancer: A systematic review of clinical trials. Breast Cancer Research and Treatment, 109, 9-26. doi:10.1007/s10549-007-9638-0
    Collins, L. G., Nash, R., Round, T., & Newman, B. (2004). Perceptions of upper-body problems during recovery from breast cancer treatment. Supportive Care in Cancer, 12, 106-113. doi:10.1007/s00520-003-0554-5
    Cormier, J. N., Xing, Y., Zaniletti, I., Askew, R. L., Stewart, B. R., & Armer, J. M. (2009). Minimal limb volume change has a significant impact on breast cancer survivors. Lymphology, 42, 161-175.
    Costanzo, E. S., Lutgendorf, S. K., Mattes, M. L., Trehan, S., Robinson, C. B., Tewfik, F., & Roman, S. L. (2007). Adjusting to life after treatment: Distress and quality of life following treatment for breast cancer. British Journal of Cancer, 97, 1625-1631. doi:10.1038/sj.bjc.6604091
    Coster, S., Poole, K., & Fallowfield, L. J. (2001). The validation of a quality of life scale to assess the impact of arm morbidity in breast cancer patients post-operatively. Breast Cancer Research and Treatment, 68, 273-282.
    Deltombe, T., Jamart, J., Recloux, S., Legrand, C., Vandenbroeck, N., Theys, S., & Hanson, P. (2007). Reliability and limits of agreement of circumferential, water displacement, and optoelectronic volumetry in the measurement of upper limb lymphedema. Lymphology, 40, 26-34.
    DiSipio, T., Rye, S., Newman, B., & Hayes, S. (2013). Incidence of unilateral arm lymphoedema after breast cancer: A systematic review and meta-analysis. Lancet Onocology, 14, 500-515.
    Erickson, V. S., Pearson, M. L., Ganz, P. A., Adams, J., & Kahn, K. L. (2001). Arm edema in breast cancer patients. Journal of the National Cancer Institute, 93, 96-111. doi:10.1093/jnci/93.2.96
    Fu, M. R., Ridner, S. H., & Armer, J. (2009). Post-breast cancer. Lymphedema: Part 1. American Journal of Nursing, 109, 48-54. doi:10 .1097/01.NAJ.0000357172.94131.58
    Greenslade, M. V., & House, C. J. (2006). Living with lymphedema: A qualitative study of women's perspectives on prevention and management following breast cancer-related treatment. Canadian Oncology Nursing Journal, 16, 165-179.
    Jain, M. S., Danoff, J. V., & Paul, S. M. (2010). Correlation between bioelectrical spectroscopy and perometry in assessment of upper extremity swelling. Lymphology, 43, 85-94.
    Kwan, M. L., Darbinian, J., Schmitz, K. H., Citron, R., Partee, P., Kutner, S. E., & Kushi, L. H. (2010). Risk factors for lymphedema in a prospective breast cancer survivorship study: The Pathways Study. Archives of Surgery, 145, 1055-1063. doi:10.1001/archsurg.2010.231
    Kwan, M. L., Shen, L., Munneke, J. R., Tam, E. K., Partee, P. N., André, M., … Thiadens, S. R. (2012). Patient awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery system. Breast Cancer Research and Treatment, 135, 591-602. doi:10.1007/s10549-012-2199-x
    Lee, T. S., Kilbreath, S. L., Sullivan, G., Refshauge, K. M., & Beith, J. M. (2007). The development of an arm activity survey for breast cancer survivors using the Protection Motivation Theory. BMC Cancer, 7, 75. doi:10.1186/1471-2407-7-75
    Lee, T. S., Kilbreath, S. L., Sullivan, G., Refshauge, K. M., Beith, J. M., & Harris, L. M. (2009). Factors that affect intention to avoid strenuous arm activity after breast cancer surgery. Oncology Nursing Forum, 36, 454-462. doi:10.1188/09.ONF.454-462
    Lee, Y. M., Mak, S. S., Tse, S. M., & Chan, S. J. (2001). Lymphoedema care of breast cancer patients in a breast care clinic: A survey of knowledge and health practice. Supportive Care in Cancer, 9, 634-641.
    McLaughlin, S. A. (2012). Lymphedema: Separating fact from fiction. Oncology, 26, 242-249.
    McLaughlin, S. A., Bagaria, S., Gibson, T., Arnold, M., Diehl, N., Crook, J., … Nguyen, J. (2013). Trends in risk reduction practices for the prevention of lymphedema in the first 12 months after breast cancer surgery. Journal of the American College of Surgeons, 216, 380-389. doi:10.1016/j.jamcollsurg.2012.11.004
    Mertz, B. G., Bistrup, P. E., Johansen, C., Dalton, S. O., Deltour, I., Kehlet, H., & Kroman, N. (2012). Psychological distress among women with newly diagnosed breast cancer. European Journal of Oncology Nursing, 16, 439-443. doi:10.1016/j.ejon.2011.10.001
    National Lymphedema Network. (2012). Position statement of the National Lymphedema Network: Summary of lymphedema risk reduction practices. Retrieved from
    National Lymphedema Network. (2013). Position statement of the National Lymphedema Network: Exercise. Retrieved from
    Norman, S. A., Localio, A. R., Kallan, M. J., Weber, A. L., Torpey, H. A., Potashnik, S. L., … Solin, L. J. (2010). Risk factors for lymphedema after breast cancer treatment. Cancer Epidemiology, Biomarkers and Prevention, 19, 2734-2746. doi:10.1158/1055-9965.EPI-09-1245
    Paskett, E. D., Naughton, M. J., McCoy, T. P., Case, L. D., & Abbott, J. M. (2007). The epidemiology of arm and hand swelling in premenopausal breast cancer survivors. Cancer Epidemiology, Biomarkers and Prevention, 16, 775-782. doi:10.1158/1055-9965.EPI-06-0168
    Paskett, E. D., & Stark, N. (2000). Lymphedema: Knowledge, treatment, and impact among breast cancer survivors. Breast Journal, 6, 373-378. doi:10.1046/j.1524-4741.2000.99072.x
    Radina, M. E., Armer, J. M., Culbertson, S. D., & Dusold, J. M. (2004). Post-breast cancer lymphedema: Understanding women's knowledge of their condition. Oncology Nursing Forum, 31, 97-104.
    Ridner, S. H. (2005). Quality of life and a symptom cluster associated with breast cancer treatment-related lymphedema. Supportive Care in Cancer, 13, 904-911. doi:10.1007/s00520-005-0810-y
    Ridner, S. H., Dietrich, M. S., Deng, J., Bonner, C. M., & Kidd, N. (2009). Bioelectrical impedance for detecting upper limb lymphedema in nonlaboratory settings. Lymphatic Research and Biology, 7, 11-15. doi:10.1089/lrb.2008.1003
    Ridner, S. H., Montgomery, L. D., Hepworth, J. T., Stewart, B. R., & Armer, J. M. (2007). Comparison of upper limb volume measurement techniques and arm symptoms between healthy volunteer and individuals with known lymphedema. Lymphology, 40, 35-46.
    Sagen, A., Karesen, R., & Risberg, M. A. (2009). Physical activity for the affected limb and arm lymphedema after breast cancer surgery. A prospective, randomized controlled trial with two years follow-up. Acta Oncologica, 48, 1102-1110. doi:10.3109/02841860903061683
    Sander, A. P., Wilson, J., Izzo, N., Mountford, S. A., & Hayes, K. W. (2012). Factors that affect decisions about physical activity and exercise in survivors of breast cancer: A qualitative study. Physical Therapy, 92, 525-536. doi:10.2522/ptj.20110115
    Schmitz, K. H., Ahmed, R. L., Troxel, A., Cheville, A., Smith, R., Lewis-Grant, L., … Greene, Q. P. (2009). Weight lifting in women with breast-cancer-related lymphedema. New England Journal of Medicine, 361, 664-673. doi:10.1056/NEJMoa0810118
    Shih, Y. C., Xu, Y., Cormier, J. N., Giordano, S., Ridner, S. H., Buchholz, T. A., … Elting, L. S. (2009). Incidence, treatment costs, and complications of lymphedema after breast cancer among women of working age: A 2-year follow-up study. Journal of Clinical Oncology, 27, 2007-2014. doi:10.1200/JCO.2008.18.3517
    Smoot, B. J., Wong, J. F., & Dodd, M. J. (2011). Comparison of diagnostic accuracy of clinical measures of breast cancer-related lymphedema: Area under the curve. Archives of Physical Medicine and Rehabilitation, 92, 603-610. doi:10.1016/j.apmr.2010.11.017
    Soran, A., Wu, W. C., Dirican, A., Johnson, R., Andacoglu, O., & Wilson, J. (2011). Estimating the probability of lymphedema after breast cancer surgery. American Journal of Clinical Oncology, 34, 506-510.
    Specht, M. C., Miller, C. L., Russell, T. A., Horick, N., Skolny, M. N., O'Toole, J. A., … Taghian, A. G. (2013). Defining a threshold for intervention in breast cancer-related lymphedema: What level of arm volume increase predicts progression? Breast Cancer Research and Treatment, 140, 485-494. doi:10.1007/s10549-013-2655-2
    Stanton, A. W., Northfield, J. W., Holroyd, B., Mortimer, P. S., & Levick, J. R. (1997). Validation of an optoelectronic limb volumeter (Perometer). Lymphology, 30, 77-97.
    Stout Gergich, N. L., Pfalzer, L. A., McGarvey, C., Springer, B., Gerber, L. H., & Soballe, P. (2008). Preoperative assessment enables the early diagnosis and successful treatment of lymphedema. Cancer, 112, 2809-2819. doi:10.1002/cncr.23494
    Tam, E. K., Shen, L., Munneke, J. R., Ackerson, L. M., Partee, P. N., Somkin, C. P., … Kwan, M. L. (2012). Clinician awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery setting. Breast Cancer Research and Treatment, 131, 1029-1038. doi:10.1007/s10549-011-1829-z
    Tewari, N., Gill, P. G., Bochner, M. A., & Kollias, J. (2008). Comparison of volume displacement versus circumferential arm measurements for lymphoedema: Implications for the SNAC trial. ANZ Journal of Surgery, 78, 889-893. doi:10.1111/j.1445-2197.2008.04686.x
    Thomas-MacLean, R., Miedema, B., & Tatemichi, S. R. (2005). Breast cancer-related lymphedema: Women's experiences with an underestimated condition. Canadian Family Physician, 51, 246-247.
    Tsai, R. J., Dennis, L. K., Lynch, C. F., Snetselaar, L. G., Zamba, G. K., & Scott-Conner, C. (2009). The risk of developing arm lymphedema among breast cancer survivors: A meta-analysis of treatment factors. Annals of Surgical Oncology, 16, 1959-1972.
    Tudor-Locke, C., Ainsworth, B. E., Washington, T. L., & Troiano, R. (2011). Assigning metabolic equivalent values to the 2002 census occupational classification system. Journal of Physical Activity and Health, 8, 581-586.
    Ward, L., Winall, A., Isenring, E., Hills, A., Czerniec, S., Dylke, E., & Kilbreath, S. (2011). Assessment of bilateral limb lymphedema by bioelectrical impedance spectroscopy. International Journal of Gynecological Cancer, 21, 409-418. doi:10.1097/IGC.0b013e31820866e1