Lymphedema: The seemingly forgotten complication

Vol. 9 No. 4 Ma): I994

Margaret

Farncombe,

Journal of Pain and Symptom Management

249

MD, Gail Daniels, RF’T, and Lisa Cross, MD

Palliative Care Seruice (M.F.), Ottawu Civic Hospital; Commzenig Care Therapy (G.D.), Ottawa-Carktou Heaith Dqartment; and Family Practice (L.C.), Ottawa, Ontario, Canada

Abstract Lymphedema, a frequent and debilitating symptom in. patients who undergo treatment for breast cancer, is often neglected. This artick outlines a therapeutic stratca and provides a cm-e study that illustrates that effective in-home treatment of this complication is possible. Effective treatment can dramaticaliy improve th.e quality of lzfe of this patient population. J Pain

Symptom Manage 1994;9:269-276. Key words Lymphedema, breast cancer, incidence, @v&nce,

symptoms, treatment

.4cquired or secondary lymphedema is a subcutaneous accumulation of protein-rich fluid caused by damaged or blocked lymphatic vessels. In the cancer population, it occurs quite commonly in both upper and lower extremities, and can be due to the disease itself or to the treatment for the disease. It is most common in the upper extremities of patients with breast cancer who have been treated with mastectomy and adjuvant radiotherapy. Breast cancer is the most prevalent malignancy in women in North America and will affect one in nine women during their lifetime.‘*2 Primary therapies based on mastectomy and radiotherapy are increasingly extending patient life span, but also place patients at high risk of developing lymphedema.’ Address reprint requests to: Margaret Farncombe, MD, Palliative Care Service, Ottawa Civic Hospital, 1053 Carling, Ottawa, Ontario KlY 4E9, Canada.

Acceptedfor publication: October 21, 1993. 0 U.S. Caucer Pain Relief Committee, 1994 Published by Elsevier, New York, New York

The available data concerning the incidence and prevalence of 1yrnphedemasA associated with breast cancer is contradictory and misleading, possibly because the criteria for diagnosing this problem are not standardized, the type and extent of surgery is variable, and the length of follow-up is frequently too short to include those with late-onset lymphedema. Nonetheless, there is geneml agreement that axillary node clearance and postoperative radiotherapy increases the risk of this complication. One study observed that the incidence of late arm lymphedema is 11% in patients who undergo mastectomy alone and 46% in those treated with both mastectomy and adjuvant radiotherapy.” Another study” provides similar statistics, concluding that both preoperative and postoperative radiotherapy increase the risk of lymphedema. In 1986, Kissin and colleagues reported an incider‘ce of 38.3% among patients undergoing axillaly clearance plus radiotherapy.7 If these findings hold generally true, then lymphedema is indeed a very common complic;r lion.

W. 9 No. 4 May 1994

Farncombe et al.

270

Table I Stages

of Lymphedema

Early Edema is pitting Improves with elevation Second Stagnation of plasma proteins Chronic inflammation, fibrosis, and sclerosis Firm, nonpitting edema Third Overproduction of connective tissue Hardening of skin “Lymphostatic elephantiasis”

Symptoms of Lymphedema Symptoms of lymphedema have been reported to occur within days to years of diagnosis and treatment for breast cancer. It frequently occurs in three stages (Table 1). During the early stages, edema is pitting and will decrease with elevation of the limb. As the condition progresses untreated, the edema becomes firm as skin and subcutaneous tissue is damaged. The most common complaints are listed in Table 2. Although pain or discomfort is common, patients often complain about “heavttress” or loss of function as their primary concern. Many women describe the limb as “ugly” and find it impossible to wear their own clothing due to the physical size of the affected limb. In addition, patients frequently feel that they have lost their independence and freedom because of both the difftculty experienced in managing the activities of daily living with the often “useless, heavy arm,” and the embarrassment of meeting people with “this deformity.” For all these reasons, patients’ quality of life is often severely compromised.

also be consistent, clearly understood, and convenient. As early as 1855, reports in the literature outlined a treatment approach consisting of hygienic measures, elevation, and compression.* Excellent results were reported at that time and, with minor alterations, this treatment plan can still be very effective today. Our palliative care service has recently accepted referrals for patients with lymphedema. Most patients referred have had this complication for an extended period, and many have already had extensive treatment elsewhere. We describe the treatment plan used by our service because we feel that it offers good, consistent results with little discomfort or inconvenience. This is of primary importance, because the single most important factor in the management of lymphedema is patient comp1iance.s:’ Treatment is most effective when a multidisinvolving physicians, ciplinary approach nurses, physiotherapists, and occupational therapists is followed. to Given the importance of patient cooperation and compliance, assessment and continued treatment by a psychiatrist or psychologist are often very valuable in identifying problems and providing appropriate intervention related to the overall psychological adjustment of patients with these specific concerns. I 1 Treatment consists of several basic but important factors (Table 3). Education Patients must be aware from the onset that treatment will probably be required for the rest of their lives. It is important for the patient to begin management as early as possible and to Table 2

Symptoms of Lymphedema

Treatment fm Lymphedema The pathophysiology of lymphedema is poorly understood. The edema is probably multifactorial and related to damage to both lyrnphatics and the venous circulation or other tissues as well. For this reason, treatment has also been variable and, to date, there has been no standardized approach. Lymphedema is a chronic condition, however, and treatment must, therefore, be chronic. To be effective and to encourage patient compliance, it must

Edema of affected limb Pitting vs firm edema Sensory changes Ioss of normal sensation Pain, discomfort, and heaviness Loss of function Skin changes Abrasions, cellulitis, and weeping Lass of mobility and independence Poor self-image “Ugly, useless” limb

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the IytTlph~~~lni~totts limb. I’;#he instructed to carefi~lly ohsc~c and report any skin hrcakdorvn. reddcncd areas to thrir dortoi~ They should not cared hca\~ the affcctecl arm. should avoid prcssurc ~ncasr~rc~i~r~~ts or vcnipin that limb, and must avoid cscess

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proximally for each segment. Only a gentle pressure is exerted to prevent rlamagc to skin and other tissues. To ensure good resuits. it is important to teach the patient am-l a caregiver how to do the massage including massage of the posterior trunk.

is removed, The hand and arm should be exercised only when the sleeve or bandaging is worn to promote improved circulation and fluid return proximally. If the edema is mild or moderate, and the patient has use of the limb, the usual daily activities may be sufficient exercise. If this is not the case, formal exercises within the patient’s abilities and range of comfort need to be taught.

~onit~~ng The size of the limb should be measured prior to beginning treatment and at regular intervals during management to permit detailed following of the patient’s progress. Several methods of measurement have been used.3 The arms may be measured at only one location and compared with previous measurements. A difference of 2.5 cm indicates moderate lymphedema. In a variation on this method, measurements are taken at two or three levels and results are compared. These methods tend to be unreliable because of the variability of the shape of the limb from point to point and differences in shape before and after treatment.” Other practitioners advocate submersion of the limb in water and measuring the volume of the displaced liquid. This method, although considered to be the most accurate, is a complicated and very messy procedure that is impractical for home use. A less accurate but more practical method of assessing limb volume is shown in Figure 1. The circumference of the arm is taken at 2-cm intervals and an adapted formula for the volume of a cylinder is used to determine the volume of the arm from wrist to axilla. This me~odolo~ is more precise than using only a few comparative points and allows for more accurate and detailed comparisons with the other arm and with the same arm over time. It is also much easier and less cumbersome than submersion in water and can be readily undertaken in the patient’s home. It does not, however, provide for the volume of the hand, which must be determined and compared separately. A decrease in limb size indicates that treatment is beneficial and should be maintained, but, more importantly, such a result also encourages patient compliance. This is particularly impor~nt when visual changes are not obvious. Volumetric measurements provide a quantitative result and are extremely valuable

for determining progress. Other

and follo~ng

the treatment

Treatment Options

A variety of other treatment deserve mention. Antibiotics should be used early for any sign of cehulitis. Usually oral penicillin or erythromycin will be sufftcient. When weeping edema is present, antibiotics may be required for a prolonged period of time. Steroids are often useful when edema is felt to be secondary to obstruction by tumor or enl~ged lymph nodes. If there are no contraindications to the use of steroids, a trial of dexamethasone is recommended. Diuretics may be of benefit in treatment of limb edema if the swelling is of mixed origin. However, the function of the lymphatics is to remove protein and other macromolecules from the tissues.” With the use of diuretics, fluid can be absorbed back into the vascular compartment, but proteins can only return via lymphatics or can be broken down by phagocytosis. Diuretics, therefore, offer little improvement in true lymphedema and, in fact, may cause complications by mobilizing fluid from everywhere except the lymphedematous limb, resulting in hypotension and electrolyte disturbances. Intermittent sequential pneumatic compression pumps have been used extensively in the treatment of lymphedema. Some results have been encouraging, especially in the short term. Patients who used these devices in studies, however, still wore compression sleeves between sessions with the pump, and it is unclear whether the combination of pump and sleeve is any better in the long term than the sleeve alone.‘s The use of pneumatic pumps necessitate prolonged periods in clinic for treatment or considerable expense to the patients if buying a pump for home use. This makes treatment less accessible, more time consuming, and less convenient, al1 of which affects long-term compliance. If the pump is used, a compression garment must be applied afterward to prevent recurrence of edema, and care must be taken to ensure that the garment is not too tight as the edema recurs. Pumps should never be used in patients with edema involving the trunk.

---

Fig. 1. Chart for upper extremity measurements.

Fig. 2.

Before treatment.

The following case study illustrates the truly debilitating nature of lymphedema in a patient whose quality of life had drastically changed despite the fact that her cancer had been reportedly cured by the primary treatment undertaken some twelve years earlier. A 7S-year-old woman had endured a right radical m~tectomy in June 19’79, foilowed by adjuvant radiotherapy. Until her surger)r, this patient had been an active, healthy woman who derived pleasure from her career, her family, *and her many hobbies. Following surgery, she returned to work for 6 months but took an early retirement because of discomfort stemming from the swelling in her right arm. Over the next 10 years, her arm gradually increased in size, and she began very gradually to lose function in the entire limb. In 1990, following an admission to hospital for an unrelated problem, she was treated for many months with a pneumatic pump. This produced little, if any, decrease in arm size. With this treatment, however, her arm did remain soft and pliable. By April 1992, the patient was severely incapacitated by her huge, swoilen, “useless” limb (Figure 2). She was unable to walk independently and required a wheelchair for mobility. She required assistance to transfer to bed or toilet; someone was needed to carry the weight of her arm when she moved about. She was completely dependent for bathing and required assistance with dressing and with her

meals. She was unable to climb the stairs, and a hospital bed was installed in the living room of her home. By September 1992, she required a nursing assistant to be in attendance during nighttime periods because she was unable to even change position in bed without physical assistance. Active movement in her right arm had become restricted to scapular movements only. Her shoulder was very painful because of bearing the great weight of her arm. The sensation in her right arm and hand was severely impaired, as indicated by a burn suffered accidentally from a heating pad. On thinking back, the patient says she “felt absolutely useless and depended on everyone else for everything.” These conditions proved very difftcult for a woman who had always been independent and self~ufflcient. In October 1992, she was referred by a physiotherapist and a new family physician to the symptom control/palliative care service for assessment. Initial measurements were taken, and a daily treatment regimen was started based on good skin care, massage, and bandaging with elastic wrapping. Apart from the initial office visit and assessment, all treatment was done by a physio~e~pist in the patient’s own home. As this woman was also concurrently being treated with diuretics for hypertension and was very short of breath following any exertion, her diuretics were increased slightly to redress these problems as well as to facilitate any loss of edema in the arm related to a cardiac or venous etiology. Measurements were taken and recorded regularly. Figure 3 outlines the decrease in volume of the right arm during the course of treatment. The volume of the arm decreased dramatically during the early stages of treatment and, after only 3 days, the patient reported a noticeable reduction in the weight of her arm. She was again able to roll over in bed and to even sit on the side of her bed without assistance. The use of the nighttime nurse was discontinued. After 1 week, she was walking very short distances and, after 2 weeks, we were able to stop bandaging and apply an elastic compression sleeve. Visits by the ph~io~e~pist were decreased to three times per week. Two months after the beginning of treatment, the patient was again able to climb stairs and to

W. 9 No. 4 May 1994 _~

Lymphedema: The Seemingly Forgotten Complication

275

Fig. 3. Treatment results. sleep in her own bed. She was wearing a smaller sleeve and went out for her first shopping trip. She was much less short of breath, and her blood pressure stabilized in the normal l-ange. She looked forward to preparations for Christmas now that she could again take an active role. At about this time, active assisted arm exercises were also initiated. Some sensation and function slowly returned to the arm. As the sensation returned, she also began to experience a “pins and needles” feeling which was worse while wearing the sleeve. She occasionally removed the sleeve for comfort, and this resulted in a small increase in the size of the arm (Figure 3;. This discomfort has been treated with a tricyclic antidepresqnt ~2 measurements are again reflecting gooci compliance. At the present time-7 months after beginning treatment-the patient remains well and continues to be disease free (Figure 4). She is able to walk to the car and can go to church and other functions without her wheelchair.

She is more energetic and has a more positive outlook in general. She can get into the bathtub with the aid of a bath seat and can dress independently. She now not only does not need help with feeding but can prepare a simple meal by herself and helps her husband with the dishes. She is again able to weal’ her own clothes without having to alter the right sleeve and can wear a normal coat. She has gained active shoulder, elbow, and forearm movements, as well as active wrist extension. At Easter time, the family was together and the patient was no longer an invalid but contributing as an active participant in the celebration. This period coincided with her 78th birthday. She is no longer on the palliative-care caseload and looks forward tc: many more birthdays to come.

c0nc1ti092 Lymphedema is a q;ery prevalent symptom in women with breaai cancer, which can arise as a result of the disease or its trc:ierlnent. It causes

treatment of lymphedema Dis 1985;36:171-180.

of the limbs. Angiol J Vase

3. Markby R, Baldwin W, Kerr P. Incidence of lymphedema on women with breast cancer. Prof Nurse 1991;6:502-508. 4. Markowsk~ J, Wilcox JP, Helm PA. ~ymphedema incidence after specific postmastectomy therapy. Arch Phys Med Rehab 1981;62:449-452. 5. Mortimer PS. Investigation and management fymphodema. Vast Med Rev 1990;1:1-20.

of

6. Ryttov N, Holm NV, Qvist N, Blichert-Toft M. Influence of adjuvant irradiation on the develop ment of late arm lymphedema and impaired shoulder mobility after mastectomy for carcinoma of the breast. Acta Oncol 1988;27:667-670.

Fig. 4. Seven months after treatment

started.

considerable morbidity and greatly affects quality of life. There is a definite need for a treatment strategy that is uncomplicated and consistent, and thus encourages patient compliance for the long term. The treatment strategy that has been adopted by the symptom control/palliative care service at the Ottawa Civic Hospital, Ottawa, Canada, can be effective not only in recovering at least some sensation of feeling and function in the affected limb, but also in affording the patient a renewed sense of well-being and self-respect.

1. Statistics Canada, Health and Welfare Canada, Provincial Cancer Registeries. Canadian cancer statistics. Ottawa: National Cancer Institute of Canada, 1992. 2. Fiildi E, Fbldi M, Weissleder

H. Conservative

7. &sin MW, Querci della Revere G, Easton D, Westbury G. Risk of lymphedema following the treatment of breast cancer. Br J Surg 1986;73:580584. 8. Rose KE, Taylor HM. Twycross RG. Long-term compliance with treatment in obstructive arm lymphedema in cancer. Palliat Med 1991:52-55. 9. Zeissler RH, Rose GB, Nelson PA. Postmastectomy lymphedema: late results of treatment in 385 patients. Arch Phys Ned Rehab 1972;55:159-166. 10. Brennan M. Lymphedema following the surgical treatment of breast cancer: a review of pathophysiology and treatment. J Pain Symptom Manage 1992;7:110-117. 11. Passik S, Newman M, Brennan M, Holland J. Psychiatric consultation for women undergoing rehabilitation for upper-extremity lymphedema following breast cancer treatment. J Pain Symptom Manage 1993;8:226-233. 12. Swedborg I, Wallgren A. The effect of pre- and postmastectomy radiotherapy on the degree of edema, shoulder-joint mobility and gripping force. Cancer 1982;47:877-881. 13. Zanolla R, Monzegolio C, Balzarini A, Martin0 G. Ev~uation of the results of three different methods of postmastectomy lymphedema treatment. J Surg Oncol1984;26:210-213.