Managing lymphedema in people with advanced Cancer

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Managing lymphedema in people with advanced Cancer

Postby patoco » Sat Jun 24, 2006 12:57 am

Understanding and managing lymphoedema in people with advanced cancer

Author(s): Anne Williams

Anne Williams explores the impact of lymphoedema, describes how various factors contribute to oedema formation in advanced cancer and discusses the management strategies appropriate for this group, within the context of palliative care.

Anne F. Williams RGN, MSc, RDN, RNT, ENB 237 is a Lecturer in Chronic Oedema/ Lymphoedema Practitioner, University of Glasgow, Division of Nursing and Midwifery, Glasgow - Article accepted for publication: July 2004

Information on lymphoedema courses are available from:
British Lymphology Society
1 Webb's Court, Buckhurst Avenue, Sevenoaks, Kent, TN13 1LZ
Tel: 01732 740850 Fax: 01732 459225

University of Glasgow
Division of Nursing and Midwifery
59 Oakfield Avenue, Glasgow G12 8LW
Tel: 0141 330 2070

The presence of lymphoedema in people with advanced cancer can lead to significant distress for patients and their families. It also presents challenges for health professionals as various medical conditions may co-exist in these patients to produce a progressive oedema that does not readily respond to treatment. Swelling may be confined to one or more limb and may also affect the trunk and genitalia. The swollen limb can become heavy, often complicated by pain and other problems such as lymphorrhoea or a fungating wound. This paper will explore the impact of lymphoedema, describe how various factors contribute to oedema formation in advanced cancer and discuss the management strategies appropriate for this group, within the context of palliative care.

Palliative care
The World Health Organisation (WHO) defined palliative care as:

'the active, total care of patients whose disease no longer responds to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families'
(WHO, 1990).

The management of people with lymphoedema in advanced cancer reflects the principles of palliative care, with a focus on the palliation of physical symptoms and maintenance of independence for as long and as comfortably as possible (Johnston, 1999). An emphasis on open communication with patients and their families and a well co-ordinated multi-professional team approach is therefore paramount. Specialist advice from appropriately qualified lymphoedema practitioners should be sought where available.

Impact of lymphoedema
Lymphoedema has been shown to significantly affect quality of life (Johnasson et al., 2003; Engel et al.,2003; Sitzia & Sobrido, 1995) leading to fear, anxiety and distress (Tobin et al., 1995; Woods, 1993). Studies have shown a range of problems associated with lymphoedema including pain, discomfort, difficulties with clothing, reduced function and mobility, social isolation and employment difficulties (Moffat et al., 2003; Woods, 1993). A study by Johansson et al. (2003) has also described the difficulties experienced by women with arm lymphoedema in terms of the reactions and attitudes of others.

In people with advanced cancer, the swollen limb can become a central focus for the patient and family. Not only does it provide a constant reminder of the cancer but for some, the lymphoedema also represents a marker of advancing disease. Altered sensations can be a significant problem (Woods, 1993). Neuropathic pain, due to radiation fibrosis or infiltrating disease may lead to particular distress. The lymphoedematous limb may also become severely dependent if a brachial plexus neuropathy is present. Several authors have shown the effect of lymphoedema treatment in reducing pain (Mondry et al., 2004; Sitzia & Sobrido, 1997) although there is very little written on the subject of lymphoedema in advanced cancer and there are no research studies in this area.

Contributing factors
Commonly, a number of factors contribute to oedema formation in people with advanced cancer (Keeley, 2000). These factors often co-exist and include:

- Lymphatic insufficiency.
- Tumour recurrence/obstruction.
- Venous thromboembolism.

- Infection/inflammation.
- Cardiac failure.
- Chronic renal failure.
- Hypoproteinaemia.
- Effects of medications.
- Reduced mobility and function.

The lymphatic system normally removes excess water and other substances from the interstitial tissues. Cancer treatments such as surgery and radiotherapy compromise lymph drainage. Lymphoedema may be due to lymph node dissection and/or post-radiation fibrosis of remaining lymph nodes and vessels (Figures 1 & 2). A study of women following breast cancer treatment has shown that over 30 per cent will develop some degree of swelling in the limb (Querci ella Rovere et al., 2003). A 29 per cent incidence of leg lymphoedema has also been shown in patients following inguinal groin dissection in the management of malignant melanoma (Serpell et al., 2003).

Metastatic cancer can obstruct lymphatic and venous return. Some cancers such as those of the breast, penis, vulva and malignant melanoma metastasise to regional lymph nodes in the axillary or inguinal areas. Cancer recurrence should be considered in an oedema of sudden onset or progression although, in early stages, the recurrent disease may not be readily identified on examination and investigation. Tumour infiltration of the skin may lead to skin tethering and a local obstructive oedema. For example, an inflammatory carcinoma of the breast may infiltrate dermal lymphatics leading to an erythema and oedema of the breast. The possibility of tumour recurrence should therefore be considered in any breast oedema before treatment is initiated.

An abdominal tumour mass can obstruct lymphatic and venous return leading to a bilateral leg oedema involving the trunk and buttocks. Okeke et al. (2003) describe bilateral swelling occurring in an invasive testicular cancer when metastatic tumour in retroperitoneal lymph nodes compresses the inferior vena cava. Ascites may also develop in these patients, particularly near the end stages of life (Preston et al., 2004).

The possibility of venous obstruction or thromboembolism is an important consideration in this group of patients for several reasons. The risk of deep venous thrombosis is high in people with advanced cancer (Lee & Levin, 1999) and cancers of the pancreas, ovary and brain are strongly associated with thrombotic complications (Lee, 2003). Some degree of axillary vein outflow obstruction has also been reported in up to 70 per cent of women with breast cancer related lymphoedema (Svensson et al., 1994) and may contribute to a persistent oedema due to venous hypertension in the arm. Other signs suggestive of venous outflow obstruction include the appearance of collateral veins on the adjacent trunk and root of the limb and a cyanotic congested appearance of the skin (Mortimer et al., 1993). Investigation with Doppler ultrasound to exclude thrombosis may be indicated. Superior vena caval obstruction, associated with cancers of the lung and breast may also contribute to limb swelling and limits treatment options for lymphoedema as compression and massage techniques are contraindicated in these patients.

Various other processes will disturb the balance between capillary filtration and reabsorption between blood capillary and interstitial tissues (Williams, 2003). Local infection and inflammation alters the permeability of the endothelial wall of blood capillaries, increasing capillary filtration into the tissues.

The capillary wall is also affected by high venous pressure such as in congestive cardiac failure (Hofman, 1998). Hypoproteinaemia may occur in patients with hepatic disease, nephrotic syndrome, or nutritional deficiency, as in cancer cachexia, and produces a generalised peripheral oedema and frequently an ascites. This is due to changes in protein metabolism, for example in liver metastases, which reduce plasma protein levels and alter the plasma colloid osmotic pressure, thus limiting the reabsorption of fluid back into the blood capillaries from the interstitial tissues.

Swelling may also be influenced by the effects of medication such as steroids, non-steroidal anti-inflammatory drugs (NSAIDs) and cytotoxic chemotherapy. High dose steroids are used to reduce the size of an obstructive tumour mass and therefore may improve lymphoedema, but are also associated with fluid retention. Equally, drugs such as docetaxel (Taxotere) aim to improve cancer status but may also exacerbate the oedema. The general fatigue and debility often occurring in individuals with advanced cancer can lead to altered mobility and function. The lymphatic system relies on the muscle pump and alterations in tissue pressures to enhance lymph return (Hughes, 2000) and patients with poor mobility or those with a dependent limb or neurological deficit are also at particular risk of swelling.

A comprehensive lymphoedema assessment is required (Williams, 2003) but may be modified for this group, particularly if the patient is unwell and unable to tolerate a lengthy discussion and examination. Family members are an important source of information and details should be gained from medical notes. A comprehensive history is important to ascertain contributing factors, identify a realistic treatment plan and make appropriate referrals. Patients with suspected cancer recurrence or thromboembolism should be referred to relevant medical colleagues prior to lymphoedema treatment. Referral to the palliative care team for advice on symptom management may also be indicated.

The lymphoedema assessment should include identification of:

- Past medical history, treatment and disease status.
- Cause of swelling, where possible.
- Duration and progression of swelling.
- Location of swelling on limb, trunk, midline (head, genitalia).
- Skin and tissue problems such as fibrosis, infection, fungating wound, lymphorrhoea.
- Past and present lymphoedema treatments.
- Medications.
- Impact on quality of life.
- Patient and family goals and expectations.

Evaluation of treatment outcome is less likely to focus on limb size but more on improvements in symptoms, skin condition and quality of life. Unfortunately there are few validated tools suitable for measuring quality of life in this group although an example of a tool developed to assess and monitor function in patients with arm swelling in recurrent breast cancer has been appended here (Englund, 1996).

It is vital that the treatment plan is established in conjunction with patient, family and other professionals and important to ensure all are realistic about the expected outcome, as some oedemas may not readily respond to treatment, particularly in the end stages of life. Skilled communication, information-giving and support for patients and family members are vital in this situation.

Factors affecting outcome in these patients include advancing, obstructive tumour, venous thromboembolism, reduced mobility and function, uncontrolled pain, medications such as NSAID causing fluid retention, chronic skin problems and tissue changes such as broken skin, fibrosis, recurrent infection and lymphorrhoea.

Management strategies
Lymphoedema is managed using a combination of strategies including skin care, exercise, manual lymphatic drainage massage and support or compression therapy (British Lymphology Society (BLS), 1999a). These four approaches are often modified in this group with advanced cancer to achieve symptom management without compromising quality of life. Treatment can reduce swelling, reshape the limb and greatly improve skin condition reducing problems such as lymphorrhoea and improving general wellbeing and mobility. A short course of a modified lymphoedema bandaging, often referred to as palliative bandaging, may be indicated to reduce the fragility of the skin, enabling compression hosiery to be fitted. Specific patient goals may be met through simple measures such as application of finger bandaging to reduce hand swelling over the short term, enabling the use of a pen to write. This highlights the importance of identifying individualised and realistic goals for each person.

Skin care is a simple but crucial aspect of care and will help reduce the risk of further skin problems and infection. Use of a risk assessment tool and pressure relieving devices may also be important as oedematous skin is vulnerable to pressure and the patient may find it difficult to change position independently. Infection is a significant problem in lymphoedema due to lymph stasis and the fact that the healthy lymphatic system normally deals with infection. Acute infection usually presents as a red, hot, tender area with associated systemic symptoms such as pyrexia. However, symptoms may be modified by medications such as high dose steroids. Antibiotic therapy, such as penicillin V, co-amoxiclav or flucloxacillin is usually indicated for a 2 week period and prophylactic low-dose antibiotics are also used over the longer term if recurrent infection is a problem (Mortimer, 2000).

Fungating wounds require individual assessment and specific dressings according to need. Metronidazole gel may be indicated if infection and odour are present. Care should be taken to consider how dressings are secured as surrounding skin is likely to be oedematous and vulnerable to injury. It should be remembered that the application of lymphoedema treatments such as manual lymphatic drainage massage and compression therapy may result in a temporary increase in exudate from a fungating area and dressings should be adjusted accordingly.

Pain and altered sensations attributed to the stretching of the skin or heaviness of the limb can be significantly improved through a modified course of manual lymphatic drainage and multi-layer lymphoedema bandaging. Manual lymphatic drainage (MLD) is a very gentle but specific form of massage used to redirect fluid away from oedematous areas and help relive pain and other symptoms associated with lymphoedemea (Williams et al., 2002). In the end stages of life, the clinical efficacy of MLD may be limited although patients greatly benefit from the opportunity for 'hands-on' care. If appropriate, relatives can be taught to undertake the massage.

The modified palliative bandaging system is used to support the tissues, reduce oedema formation, protect the skin and prevent or treat lymphorrhoea. Layer 1 consists of a protective stockinette lining. A 4 or 5 cm conforming bandage is used to protect and gently compress the digits. Layer 2 consists of padding such as Cellona (Lohmann) or Flexiban (Activa) is then used to pad out shape discrepancies and provide a cylinder shape and protection over which the final layer/s of a low stretch bandage such as Rosidal K (Lohmann) is then applied using a spiral technique. Other bandages such as K-Lite (Parema) can also be used.

In applying palliative bandaging or compression garments in patients with advanced cancer, care should be taken to ensure that fluid is not forced into other areas such as the genitals, creating additional problems. Expertise is required in fitting compression hosiery for this group, and measuring and fitting should be undertaken by someone experienced in lymphoedema management. Circular knit garments in compression classes 1, 2 or 3 are available on drug tariff and may be useful provided the limb is a good shape. However, if the limb is a poor shape or specific features are required of the garment, a flat-knit custom-made garment may be required. Companies such as Haddenham Healthcare Ltd and BSN Medical Limited now provide a 5-7 day service for custom-made garments.

Where patients are undergoing further cancer treatment, for example palliative chemotherapy, it is usually advisable to delay lymphoedema treatments until the cancer therapy is complete. This is partly to ensure quality of life is not further compromised due to the logistics of undergoing both cancer and lymphoedema treatments at the same time. Additionally, the effect of cancer treatment in reducing tumour bulk may itself provide a significant improvement to the lymphoedema. However, if a patient requires garments or other advice in the short term, this should not be delayed as there is a risk of further complications should the lymphoedema become uncontrolled due to non-treatment. The increasing use of drugs such as Taxotere, which cause fluid retention and appear to exacerbate lymphoedema, emphasises the need to work closely with oncology and palliative care teams in order to achieve the best outcome for patients.

Use of diuretics
Diuretics are not usually indicated for lymphoedema but they may have a role to play in the short term in people with advanced cancer, particularly where congestive cardiac failure is a contributory cause. Frusemide may be indicated or spironolactone may be useful for its potassium sparing effect although plasma electrolytes should be monitored regularly (Keeley, 2000).

Lymphorrhoea is the leakage of lymph from a break in the skin (Figure 3). The stretched and fragile skin on a lymphoedematous limb is vulnerable and easily compromised by injury or trauma. Lymphorrhoea is unpleasant for the patient and family as clothing, bedding and shoes become damp and cold. The skin can also become further macerated and prone to infection. In most cases, clinical experience shows that lymphorrhoea can be controlled within 2-3 days using the palliative bandaging system.

Ling et al. (1997) undertook a survey into the management of lymphorrhoea in palliative care units and identified a limited evidence base and lack of policy or clinical guidelines. They also highlighted the difficulties with bandaging if the patient is very swollen or obese or where the fungating, leaking area is around the axilla or inguinal area, although this can be overcome with specialist bandaging techniques. Attention should be given to the degree of exudate in terms of choice of dressing (Forth Valley, 2004) and there is a need for regular re-evaluation of the area and reapplication of the bandage as required.

Malignant ascites is the accumulation of excess fluid in the peritoneal cavity (Preston et al., 2004) and can develop due to venous and/or lymphatic obstruction, often due to pressure from tumour mass. It can also occur due to the presence of cancer cells on the peritoneal lining leading to increased permeability and enabling fluid to escape into the peritoneal cavity. Ovarian, breast and gastrointestinal cancers are most commonly associated with ascites (Preston, 1995), which is most likely to occur as disease progresses.

The palliative management of ascites usually requires paracentesis (drainage) although steroids, diuretics, a semi-permenant catheters or peritoneal-venous shunting may also be used (Preston et al., 2004). The use of breathing exercises and the application of an abdominal binder to raise intra-abdominal pressure and delay the re-accumulation of fluid has been evaluated (Preston, 2004) and follows similar principles as in the management of a limb lymphoedema.

Genital oedema
Swelling of the genital area may occur in conjunction with lower limb swelling particularly in genitourinary cancers, following removal or irradiation of inguinal lymph nodes (Figure 2). The use of intermittent compression pumps has also been associated with genital oedema (Boris et al., 1998). Genital oedema can affect both penis and scrotum in the male and may cause swelling of the labia, perineum and internal vaginal area in the female. Genital oedema leads to discomfort and embarrassment and requires specialist intervention. Intensive manual lymphatic drainage massage and the use of palliative bandaging and/or garments are indicated. A number of companies now provide specific garments for genital oedema and these should be measured and fitted by a lymphoedema practitioner. The use of swimming trunks, bicycling shorts or other supportive lycra-based underwear can also be very effective for genital swelling.

This paper has discussed a variety of issues relating to the care and management of people with lymphoedema associated with advanced cancer. Expertise is required in providing an appropriate and realistic treatment plan for these patients within a palliative care framework. However, the evidence base is limited and Cawley and Webber (1995) have previously identified the need for further evaluation of lymphoedema treatments in this group.

The symptoms associated with lymphoedema in patients with advanced cancer can be effectively managed in the community setting although referral to a lymphoedema practitioner may be indicated for specific advice and treatments. Various factors can affect the outcome of treatment, however, particularly near the end stages of life, and the management of these patients and their families can be challenging for health professionals. Community nurses have an important role in providing ongoing support to these patients and their families.

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