By: Mary Insana Fisher, PT, PhD, OCS, CLT, Harold Merriman, PT, PhD, CLT
University of Dayton, Dayton, OH
Vol. 26 No. 1 - Lymphlink Reprint, Archived January 2014
Managing the physical aspects of lymphedema requires an individual to be committed to daily treatment of this chronic condition. Performing manual lymph drainage, using compression bandaging or compression garments, exercising, and caring for the skin all take time and a high level of dedication. This commitment to self-care can be emotionally and psychologically exhausting. When coupled with other emotional stressors in a patient’s life, successful treatment of lymphedema is challenging. We present a case demonstrating how the physical and psychological aspects of care interplay, and, when well-managed, can positively affect the outcome.
Ms. J is a 64-year-old woman who came to physical therapy for treatment of breast cancer-related lymphedema. She underwent a right modified radical mastectomy with an axillary lymph node dissection 2 years prior, followed by chemotherapy and axillary radiation. She did not undergo any reconstructive surgery. Lymphedema developed approximately 5 months after her completion of radiation treatments. Ms. J had been trying to manage her lymphedema independently for one year. In general, she expressed feelings of being overwhelmed and rather depressed.
Ms. J’s activity level and responsibilities made managing her lymphedema challenging. She is employed at a local distribution warehouse, where she is responsible for pulling stock from shelves to prepare for shipment. The items she lifts from the shelves vary in weight from under 1 pound and up to 25 pounds. She works full-time, having initially returned to work at light duty 3 months after surgical treatment, and full duty at 9 months. Ms. J is single and the primary caregiver for 3 grandchildren aged 4, 6, and 7. Her 2 older grandchildren are in school and have after school care, while the 4 year-old is enrolled in a private preschool program.
The breast care center where Ms. J received her treatment follows patients prospectively from initial diagnosis through 5 years after treatment. At her 1-, 3-, and 6-month follow-up visits, her arm volume was compared to baseline measurements, and no signs of lymphedema were present. At her 12-month visit, early signs of lymphedema were noted, including an arm volume increase of 4.5%. Ms. J reported that her watch and ring did not fit—a common early symptom of lymphedema. In this prospective surveillance program, arm volume increases of greater than 3% are treated by ordering compression garments and instructing patients in self-manual lymph drainage techniques. The patient’s insurance did not cover compression garments; however, one garment was provided through a local charity. She was instructed in specific self-management strategies for her lymphedema at this time. This included self-manual lymph drainage techniques, skin care, use of compression, and the importance of exercise.
At her 2-year prospective surveillance appointment, the therapist noted that Ms. J was not wearing a compression sleeve, and visual observation of edema was evident. Ms. J reported that her sleeve wore out and no longer fit. When asked whether she continued to perform self-manual lymph drainage, Ms. J admitted to performing this only sporadically, stating working full-time and caring for her grandchildren took too much of her time.
The therapist completed an examination of Ms. J and noted that she scored in the moderate disability range based on self-reported arm function, demonstrated impairments in arm elevation, as well as decreased right arm strength. Ms. J did report she had difficulty reaching the shelves in the kitchen cabinets, performing hair care, and had a great deal of difficulty caring for her grandchildren, especially the preschooler, who required more physical assistance in bathing. The therapist measured the right arm volume and found a 14% increase from her pre-surgical status. Complete decongestive therapy was initiated: manual lymph drainage, compressive bandaging from the hand to the shoulder, appropriate exercise, and reinstruction in self-care.
In subsequent therapy visits, Ms. J admitted she was unable to keep the bandage on during the day, as she could not perform the necessary household chores such as washing dishes and dinner preparation. She reported the bandage got in the way at work and got wet when bathing her youngest grandchild. At this point, the physical therapist contacted several community resources to assist Ms. J with the difficulties she demonstrated in juggling work, child care, and self-care. Ms. J, while highly motivated and hardworking, simply had too many duties to successfully manage her lymphedema.
One of the best strategies employed was for Ms. J to pursue and gain official custody of her 3 grandchildren, as she was doing the bulk of the childcare responsibilities. Once she was granted custody of the grandchildren, she qualified for Medicaid based on her income (eligibility, of course, varies by state). With the benefit of Medicaid, Ms. J was able to obtain coverage for compression garments. (After completing the pre-approval process, which can take some time, Medicaid, unlike Medicare, covers the cost of lymphedema garments.)
The local Area Agency on Aging can also be a wonderful resource for older adults to access helpful programs and resources in the community. Ms. J was referred to a social worker who assisted her in finding appropriate resources for herself and her grandchildren, including childcare. Her youngest grandchild qualified for Head Start, a free preschool program, which saved Ms. J tuition money which she was able to use on other necessary lymphedema supplies. Ms. J also benefitted from counseling services to address her anxiety and emotional health. She joined a local lymphedema support group, where she developed friendships with other women who faced similar struggles.
Effective support services, from a social worker, community resources, and from others with similar problems, resulted in a change in Ms. J’s outlook. Additionally, now that her compression garments were covered by Medicaid and her youngest grandchild was receiving free preschool, she did not have to worry so much about finances. This served to remove a significant emotional stressor that allowed her to better focus on her own medical issues and to work to restore her health. This change in turn increased Ms. J’s adherence to her lymphedema treatment, which was previously described as problematic. With improved compliance in self-manual lymph drainage and use of compression, Ms. J and her lymphedema therapist were able to reduce her increased arm volume by 50%, so that her right arm was only 7% larger than the left arm, at completion of intensive therapy. Ms. J was able to complete all of her work responsibilities and household activities with minimal limitations.
Each local area will have a particular blend of available community services. Knowledge of these resources will enable the lymphedema therapist to assist patients gain access. The therapist can serve as a vital link between the patient and supportive resources, with the intention to achieve optimal lymphedema outcomes.
Mary.fisher [at] udayton.edu