Primary lower limb lymphedema: a focus on its functional, social and emotional impact

**This is actually an older article that has recently become available through PubMed.  It was written in 2010 and after you read this, you will be thinking "three years later and almost no progress has been made!. It speaks of quality of life. Sad and very frustrating.  Pat**

Int J Med Sci. 2010; 7(6): 353–357.

Published online 2010 October 22.

Emmanouil K Symvoulakis, Dimitrios I Anyfantakis, and Christos Lionis

Author information ► Article notes ► Copyright and License information ►

Abstract

Primary lymphedema is a rare, chronic and distressing condition with negative effects on physical, social and emotional level. The purpose of these reports was to present and discuss two different cases of primary lower limb lymphedema with a focus on its physical and mental impact and on some qualitative aspects of patients' self-reported experiences. The patients were recruited as they used occasional services within the University Hospital of Heraklion (Crete, Greece). The functional and mental impact of primary lymphedema was measured using the generic Medical Outcome Study short form-36 questionnaire and open-ended questions led to give more emphasis to patients' experiences. The analysis of short form-36 results in the first patient disclosed a significant functional impairment with a minor impact of the condition on emotional and social domains. For the second patient quality of life scores in the emotional and social domains were affected. Our findings support further the statement that physicians should pay full attention to appraise the patient's physical and emotional condition. General practitioners have the opportunity to monitor the long-term impact of chronic disorders. Posing simple open-ended questions and assessing the level of physical and mental deficits in terms of well-being through the use of specific metric tools can effectively follow-up rare conditions in the community.

Full text article:

NIH-International Journal of Medical Sciences

A prospective study in detection of lower-limb lymphedema and evaluation of quality of life after vulvar cancer surgery.

Jul 2012

Novackova M, Halaska MJ, Robova H, Mala I, Pluta M, Chmel R, Rob L.

Source

Department of Obstetrics and Gynaecology, 2nd Medical Faculty of Charles University in Prague, Czech Republic. marta.novackova@seznam.cz

Abstract

BACKGROUND:

Lower-limb lymphedema is one of the most disabling adverse effects of vulvar cancer surgery. Multifrequency Bioelectrical Impedance Analysis (MFBIA) is a modern noninvasive method to detect lymphedema. The first aim of this study was to prospectively determine the prevalence of secondary lower-limb lymphedema after surgical treatment for vulvar cancer using objective methods, circumference measurements and MFBIA technique. The second aim was to compare quality of life (QoL) before and 6 months after vulvar surgery.

METHODS:

Twenty-nine patients underwent vulvar cancer surgery in our study: 17 underwent inguinofemoral lymphadenectomy (RAD), and 12 underwent sentinel lymph node biopsy (CONS). Patients were examined before and 6 months after vulvar surgery by measuring the circumference of the lower limbs and with MFBIA. A control group of 27 healthy women was also measured. To evaluate QoL, the European Organisation for Research and Treatment of Cancer (EORTC) QoL questionnaires (QLQ-C30 and QLQ-CX24) were administered to patients before and 6 months after surgery.

RESULTS:

Using circumference measurement, 9 lymphedemas (31%) were diagnosed: 3 (25%) in the CONS and 6 (37.5%) in the RAD group (P = 0.69). After vulvar surgery, patients in the RAD group reported more fatigue and worsening of physical and role functioning. When comparing both groups, the RAD group had significantly worse parameters in social functioning, fatigue, and dyspnea.

CONCLUSIONS:

Lower radicality in inguinofemoral lymphadenectomy shows a trend toward lower morbidity and significantly improves QoL. Multifrequency Bioelectrical Impedance Analysis was tested in these patients as a noninvasive, objective method for lymphedema detection. Detection of lymphedema based on subjective evaluations proved to have an unsatisfactory sensitivity. Less radical surgery showed objectively better results in QoL.

Lippincott, Wilkins, Williams

Leg Swelling (Lymphedema) in a Patient With Gynecologic Cancer

Leg Swelling (Lymphedema) in a Patient With Gynecologic Cancer
Lower-Extremity Lymphedema in a Patient With Gynecologic Cancer
Kathleen Appollo, RN, BSN, OCN
Oncology Nursing Forum – Vol 34, No. 5, 2006

Case Study

H.F. is a 56-year-old woman who presented to the gynecologic oncology department at a major comprehensive cancer center after an endometrial biopsy revealed an International Federation of Gynecology and Obstetrics grade III serous carcinoma of the endometri- um. In addition to relevant endometrial cancer statistics, she received information about choices for treatment. The standard surgical treatment at the cancer center consists of a total abdominal hysterectomy with bilateral salpingo-oophorectomy, pelvic lymph node dissection, and para-aortic lymph node sampling. The acute and chronic side effects of surgery were discussed, including develop- ment of lower-extremity lymphedema. H.F. was informed that the lymphedema could occur anytime after surgery and she would need to monitor for lymphedema development for the rest of her life.

After preoperative testing, H.F. had an uneventful surgical procedure and routine postoperative course. The final pathology showed high-grade stage IIIC papillary serous carcinoma deeply invading the endometrium, with spread to a left para-aortic lymph node. As result, her oncologist recommended both radiation and chemotherapy.

H.F. completed all therapy and was scheduled to return every three months for evaluation. She was cautioned to maintain skin integrity by applying moisturizers and sunscreen as needed and to avoid sources of trauma, injury, infection, and constriction to the lower extremities. In addition, she was encouraged to maintain her weight with a healthy diet and she was advised to return to the lymphedema specialist for lymphedema control.

She understands that she must be diligent in her care to maintain control. H.F. knows that she should be joyous that she is free from cancer but often wonders about the sacrifices that she has made in the quality of her per- sonal life. She did not feel the need to seek professional psychiatric help but did join a support group. Although the members of the group all have cancer, none has lymphedema.

Even so, H.F. has found that sharing difficulties with others has helped her to cope, and she feels good when she has helped another deal with a difficult issue. Although she has not returned to her former music activities, she has found that helping others in the support group has given her the same satisfaction that she felt when her music brought happiness to others.

Lymphatic System and Lymphedema

Lymph is extracellular fluid composed of water, fats, proteins, bacteria, and waste products. The lymphatic system is an inter connected network of organs, lymph vessels, and lymph nodes that transports lymph from body tissues to the bloodstream, helping to maintain body fluid balance. It also is a major component of the body’s immune system.

The superficial lymphatic capillaries are made up of endothelial cells that overlap but do not form a continuous connection. Each cell is anchored to surrounding tissue by filaments that pull on the cells in response to changes in tissue pressure. As the cell is pulled by the filament, fluid drains into the vessel. Pressure changes occur during muscle contraction, respiration, and arterial pulsation and when the skin is stretched. Lymph flows into progressively larger deep vessels that have one-way valves to ensure that the fluid moves away from tissues in a slow, steady, low-pressure system. Afferent vessels carry lymph into lymph nodes, where the lymph is filtered of cellular waste products, pathogens, and cancer cells and where lymphocytes are added.

Efferent vessels carry lymph out of the lymph nodes to return to circulation. Lymph drains from the lower limbs into the lumbar lymphatic trunk, joining the intestinal lymphatic trunk and cisterna chyli to form the thoracic duct that empties lymph into the left subclavian vein (Casely-Smith & Casely-Smith, 1997; Mortimer, 1998).

Lymphedema occurs when lymph remains in the tissues because the lymphatic system is unable to transport interstitial filtrate (Foldi, 1998; International Society of Lymphology, 2003). Primary lymphedema is a result of an absence of or abnormalities in lymphatic tissue. Secondary lymphedema, which is the focus of this discussion, results when the flow of lymph is interrupted because of malignancies, surgery, infection, trauma, or postradiation fibrosis and the lymph remains in the tissue.

Incidence and Risk Factors

Although much has been written about upper-extremity lymphedema after breast surgery, information about lower-extremity lymphedema is lacking. The literature varies widely about the number of patients affected. In one study, the incidence of lymphedema in patients after a hysterectomy with lymph node removal was 20% (Ryan, Stainton, Slaytor, et al., 2003). Another study reported a 3.4% incidence rate in patients following endometrial staging surgery, including hysterectomy, bilateral salpingo-oophorectomy, and lymph node dissection (Abu-Rustum et al., 2006). A retrospective series of staging surgery for endometrial cancer followed by radiation therapy reported an incidence of 4.6% (Nunns, Williamson, Swaney, & Davy 2000).

H.F. was at risk to develop lymphedema after her surgery for endometrial cancer because of the disruption of lymphatics and lymph nodes during staging surgery. She was at additional risk because of the postoperative radiation. Other risk factors are believed to include injury, trauma, heat changes, infection to the extremity, and weight gain and decreased mobility (Brewer, Hahn, Rohrbach, Bell, & Baddour, 2000; Mortimer, 1998).

Treatment

Although research is lacking to support many recommendations for the prevention of lymphedema (Ridner, 2002), education regarding measures that are believed to reduce risk include protecting the skin from trauma and infection. Those measures were discussed with H.F. postoperatively and at each office visit. The plan is based on the concept that any action or condition that predisposes a patient to or increases swelling may disrupt the fine balance of drainage after surgery (Mortimer, 1998). In addition, open skin may lead to infection, which can occur more easily in stagnant, protein-rich lymph fluid, a perfect medium for bacteria growth (Brewer et al., 2000). Because deep vein thrombosis and cancer recurrence can cause swelling, they were ruled out before H.F. was referred for complex decongestive therapy. Her treatment began with manual lymphatic drainage, a gentle massage that starts proximally to encourage the flow of lymph from the distal extremity. More lymph is encouraged to move into the normally functioning lymphatics (Cheville et al., 2003; Foldi, 1998; Lerner, 1998).

Massage was followed by padding of the extremity and application of short stretch compression bandages with gradual pressure changes distally to proximally. That type of bandaging helps the flow of lymph to the nodal basins (Cheville et al.; International Society of Lymphology, 2003).
H.F. was taught the techniques so that she could continue maintenance therapy at home. She was encouraged to practice manual lymphatic drainage, use compression bandages at night, wear a fitted compression garment, follow meticulous skin care guidelines, protect the leg from trauma and injury, and perform muscle-building exercises. H.F. also was taught to wear the compression garment especially during air travel because changes in atmospheric pressure may increase the pressure balance in the leg (National Lymphedema Network, 2005).

Quality of Life

Lymphedema may have a profound effect on the lives of cancer survivors (Kwan et al., 2002; Ryan, Stainton, Jaconelli, et al., 2003). H.F. described a heavy, achy feeling in her leg, which has been reported in patients with breast cancer before swelling occurred (Armer, Radina, Porock, & Culbertson, 2003). Pain assessment is crucial in helping patients to cope. An over-the-counter medication may suffice, but some patients may need prescription-strength pain medication, making individual assessment critical.

H.F. stated that her pace was slower in her walks. In patients with breast cancer, fatigue often is a troublesome symptom affecting quality of life (Armer & Porock, 2002). Pacing activities or decreasing distances may help to maintain stamina. Pacing also may deter swelling that is associated with strenuous or long-distance exercise. The need for sleep medication should be evaluated because insomnia caused by leg discomfort or worry may contribute to fatigue.
Changes in wardrobe often are necessary when swelling occurs (Ryan, Stainton, Jaconelli, et al., 2003). Alteration in body image may result in changes to regular social activities and may lead to social isolation (Tobin, Lacey, Meyer, & Mortimer, 1993). Referrals to support groups or individual therapy sessions may be indicated depending on patient preference. H.F. found that she gained much by participating in a support group and thereby moved from one type of social interaction to another. Healthcare professionals must be sensitive to lifestyle changes as well as the financial burden that may result from a forced change in wardrobe.

With increased survival after cancer treatment, the long-term sequelae caused by cancer treatment should be recognized and treated. Patients must be informed about the potential lifelong side effects of treatment. Although H.F. was informed about the possibility of lymphedema development, many patients have reported that they were not informed about this life-alterating condition until they developed symptoms (Beesley, Janda, Eakin, Obermair, & Battistutta, 2007; Ryan, Stainton, Jaconelli, et al., 2003). Continued research is needed to determine the best interventions to decrease the side effects of treatment and maximize quality of life.

Author Contact

Kathleen Appollo, RN, BSN, OCN can be reached at appollok @mskcc.org, with copy to editor at ONF Editor@ons.org.

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