Body image and quality of life in secondary lymphedema of the upper limb

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Hôpital Pitié Salpétrière
Paris, France


By definition, the goal of all treatment is to improve the patient’s state of health. The quality of life of the patient has an important role to play alongside the objective of cure or remission.
The objectives of contemporary medicine consist not only of prolonging life expectancy, but also lessening the consequences of disease and improving quality of life. Next to physiological parameters, studies of quality of life are invaluable complements to medical assessment in order to evaluate the subjective state of health and its progression.
The repercussions of quality of life in lymphedema result from the actual presence of lymphedema once the dreaded diagnosis is announced, as well as from the therapeutic constraints of its management. They disturb self-perception and modify body image. Secondary lymphedema of the upper limb or “heavy arm” is a major factor among symptoms and sequelae which complicate the life of women after breast cancer and contribute to alteration of quality of life. It is a chronic incapacitating disorder, directly linked to mechanical lymphatic insufficiency induced by treatment-related injury of the lymphatic system, in particular the major collecting lymph vessels of the thorax and axillary lymph nodes.


Any woman treated for breast cancer has a risk of developing lymphedema during or after the radio-chemo-surgical treatment necessary to eradicate the tumor. This lymphatic risk may result in the onset of “heavy arm” in almost one woman in two.
Women only rarely notice lymphatic blockage which may take the form of acute lymphedema immediately after surgery and/or radiotherapy. Increase in the size of the arm or hand may disappear almost completely then recur later and worsen. This change may also persist more or less partially and gradually progress, the woman then living in great hope of recovery.
In the short term, acute edema and lymphocele are in the patient’s history adverse lymphatic events which may form the foundations of a “heavy arm.”
In the long term, from a few weeks after the treatment of breast cancer to several months (18 months on average), or even a few years, the risk of developing lymphedema may be linked to risk factors which overload lymphatic equilibrium, in particular the woman’s lifestyle. It is often noted that women feel that they have not been warned about this risk, nor of the need to modify their lifestyle, and have an attitude of resentment when lymphedema is diagnosed.
The diagnosis confirms that there is imbalance between lymphatic load, ie, the work required from the lymphatic system to eliminate proteins and fluids which cannot recirculate via the capillarovenular system, and the ability of the system to accomplish this work.
This lymphatic stasis leads to protein-rich edema, favorizing the development of connective tissue fibrosis and inflammatory and infectious exacerbations.


The diagnosis must be made as early as possible to enhance the chances of successful treatment. Analysis of many clinical cases shows that the appearance of fixed edema is preceded by “borderline” states, with intermittent edema appearing during effort and disappearing in a few hours or days. It is essential to act at this stage so as to preserve maximum lymphatic capital and limit the creation of tissue damage which will be reversible only with difficulty.
Women treated for breast cancer often remember small increases in size during or immediately after surgery and radiotherapy, increases in size which reflect the beginning of lymphatic imbalance. Feelings of heaviness, tension, or even painful discomfort are felt, and interfere with their self-perception.
Diagnosis is based upon history and analysis of the characteristics of edema, which usually starts in the arm but also in the hand or forearm. Initially, edema resolves with rest at night, and women generally think that it will always regress until it becomes fixed edema.


Evaluation must take clinical and psychological factors into account.

Clinical parameters include assessment of size by comparative circumference measurement between the healthy arm and diseased arm, possible infectious exacerbations, ruling out possible shoulder bursitis, changes in the skin, and association with other pathological situations, obesity in particular. Psychological factors include how the patient’s self-perception is affected by lymphatic disease and disturbances of body image.

The patient’s self-perception must be analyzed, and evaluation of her quality of life and its disturbances will provide additional information.

These evaluation aspects are essential in determining the best management attitude and adapting its intensity.

The treatment of lymphedema is challenging, and is based upon complex decongestive physical therapy:
– General lifestyle attitudes, where the primary objective is to avoid lymphatic risk situations and anything which might increase the workload imposed on the deficient lymphatic system. Living with lymphedema requires a change in habits and obeying new rules. This suppressive lifestyle greatly interferes with the patient’s selfperception.
– The goal of physiotherapy is to restore the form and function of the diseased arm. Techniques used are manual lymphatic drainage and nonelastic multilayer bandages. Women have to change their personal and work arrangements because of these treatments.
– Medicines intended to reduce edema.
– Elastic compression-support, in the form of a cuff and/or gauntlet, is aimed at stabilizing the volume of the arm, noting that this treatment method is a further physical and psychological constraint for these women. Justification and explanation are required, and once again education by the practitioner is fundamental. There are criteria for the adaptation of this support: shape, comfort, ease of putting on, psychological acceptability, obtaining stability, climate, lifestyle, etc. The cuff is often poorly accepted and poorly tolerated despite these precautions.

The constraints of treatment are considerable, and are superimposed on the symptoms and signs of the disease, worsening disturbances of body image and quality of life.
Patients are confronted by an esthetic problem, functional problem, and psychological problem as soon as the disease starts.

Lymphedema is a vestige which surprises women “cured” of their cancer. The process from malignant disease to recovery of health by virtue of radio-chemo-surgical treatment is interrupted by the onset of lymphatic disease, which takes on a meaning in everyday life, is known about, can be seen, and is felt. The woman is then once again in a situation of “loss of good health.” She has shifted, suddenly or gradually, from the state of health recovered after cure of her breast disease to the beginnings of a lymphatic disease process.


Regardless of the patient’s ability to adjust, as there was a “before” and “after” cancer, there is a “before” and “after” lymphedema.
At the time of diagnosis of lymphedema, also called “heavy arm” or “elephantiasis,” the word about their lymphatic disease and its repercussions on all aspects of life is of incomparable magnitude to women when it is pronounced. The terms “heavy arm” or “elephantiasis” determine from the outset the untoward ugly appearance of this disease process, and this is how women see it and modify their body image.
Body image is an apparently unifying concept. Body image can first be described as a integrating process underlying various skills and learning (eg, identify, name, and correctly localize various parts of one’s body). It can also be described as the global configuration which forms the representations, perceptions, feelings or attitudes which individuals construct about their body. Body image is then considered to be a collection of memories, experiences, and attitudes which individuals have accumulated about their own body and which are integrated to varying degrees in a global perception. This is not an image in the strict sense of the term, but rather a collection of representations alluding to the actual physical body but also to the imaginary body.
Women suffering from lymphedema have clear changes of body image. These have been analyzed in 270 women, aged between 34 and 69, using the “bonhomme” (“model man”) test (Table I). Material consists of a black pencil and sheet of unlined white paper. The instruction is to give the woman the sheet showing the phrase: “draw yourself.” There must be no remarks nor prompting, the essential being to ensure the greatest freedom possible.

Table I
Table I. F. Goodenough’s “Bonhomme“ (“Model Man”) tests.

The control group consisted of 30 healthy women. The test response rate was 100%, bearing in mind that 29 women refused to do it at the outset, arguing that that they were bad at drawing, then later accepted.
We sought to evaluate body image in time and space, and to more precisely study the changes, distorsions, and imbalances possibly appearing in these tests when the perfection of the woman with lymphedema is gravely marred. Assessment criteria taken into account included presence of the body, parts of the body and the head and limbs, counted using Goodenough’s quantitative score (Table I) completed by a qualitative evaluation of the characteristics, traits of lymphatic disease or their omission, disorganization, sexual characteristics and the continuity of the line.

Figure 1
Figures 1 and 2. Feminity is present in drawings by controls .
Centering of drawings (on the sheet) is usually good. Sexuel features of the body
are well represented.


A discontinuous line was present in 89% of patient’s drawings, seeming to indicate difficulty producing the outline of the body, either because the woman no longer knew it or because she hesitated to represent it as she knew it, both hypotheses being envisaged (Figure 4) .
Centering was good (97%) but it should be noted that 94% of representations were in an immobile position, as if the woman was suspended in time and space and unable to use her body. It was an inert, useless body, impossible to restore to a dynamic state.
The existing body was 88% represented, but was a body with no features. Its asexual nature was very markedly represented by 81% of drawings where it was seen that whether the body was naked or dressed, it had no visible characteristics of female sexual representations.
However, this absence of signs of femininity should not lead us to think that femininity no longer existed, contrary to what happens with controls (Figures 1 and 2) but rather that it played little or less of a determinant role than other features.
The body was incomplete, and it is interesting to note that incompleteness was marked in 91% by nonrepresentation of lymphedema, either with the limbs being shown as symmetrical (Figure 3), or with dissimulation of the diseased hand or arm in a pocket or behind the back (Figure 5). It should also be noted that 94% of these women’s drawings showed no mark of breast disease and radio-surgical treatments. A final point is that all drawings made women look far younger than the truth, showing young women, with no traits of time or disease, often dressed as little girls (Figure 3).
Ninety-four percent of drawings in the control group were drawn with a clear and continuous line and there was a very marked resemblance between the subject and her representation. The body was complete, and sexual characteristics were shown on the naked (Figures 1 and 2) or dressed body. These controls drew themselves smiling in 17 drawings and details of traits of the face and extremities were very delicate.

Figures 3, 4 and 5
Figures 3, 4 and 5. A discontinuous may be present (test 2), seeming to indicate difficulty in producing the outline of the body.
Representations are mostly in an immobile position, as if women were unable to use their body, and of asexual nature. There is no
representation of lymphedema of the arms and moreover the diseased limb may be dissimulated as in test 3.


Modifications of body image in lymphedema were marked, and showed the painful impact of the disease and its consequences on the life of patients.
The objective of reducing the size of edema should tend to lead to disappearance of the consequences of lymphatic insufficiency but also to revive the self-image of the woman and improve her quality of life.
The term “quality of life” is very widely used and does not take into consideration only physical health. It is a multidimensional concept which covers other areas, chiefly physical, psychological, and social.
Indices of the health status of an individual or group have developed over the past 20 years. These indices provide information for physicians, health care authorities, and the pharmaceutical industry. In Anglo-saxon countries and France, health care authorities now approve new medicines only insofar as evidence has been provided that they are not associated with any risk of deterioration of quality of life.
Measurement of quality of life has been acknowledged recently as providing a scientific solution to the need to evaluate treatments aimed at contributing not only to lessening symptoms but also restoring a whole series of functions making up quality of life, which may range from mobility to a liking for chatting, doing odd jobs, etc.
Differences in size and circumference between the healthy arm and diseased arm are considered in the case of lymphedema. These criteria are not solely those which the woman takes into consideration and for which she hopes to obtain improvement. It is important to bear in mind the consequences of the disease and the everyday existence of patients.
The concept may seem ambiguous at first sight. It is so vast that everything might be included in it at the extreme limit: environmental factors, family happiness, housing conditions, etc. In order to limit the area covered, quality of life specialists postulate from the outset that they will consider only the consequences of health status on quality of life. The technical expression here is perfectly clear: only quality of life linked to health is dealt with.
Clinicians now use generic scales or specific quality-of-life scales.
The use of generic scales for different diseases and various population types enables comparison between these different diseases and/or populations. However, maladjustment of items in relation to the problem raised may impair sensitivity by inundating pertinent questions in an inert mass.
The specific indices method focusses on areas in which the consequences of the disease are notable, in order to enhance the sensitivity of the tool, ie, to be able to detect slight differences, but which may be clinically significant.
The main stages in the construction of a quality of life index are the creation and selection of a bank of items founded on a qualitative survey of a stratified patient population, as well as on retranscription and classification of verbal quotes, the construction of a “preliminary” questionnaire (format of question, calibration), pretesting and finalization of the preliminary questionnaire, “reduction of items” and the consummation of a quality of life index. Validation evaluates accuracy, precision, and sensitivity of the measurement tool.
The scale is precise if similar results are obtained when measuring the same type of event several times. Precision is determined by looking for the degree of random error. Methods used most widely to assess this are:
Reproducibility of the questionnaire. This is checked by “test-retest” in patients in a stable clinical state. It is presumed that the factor measured in the individual is stable and does not vary between the different measurements made.
Consistency between judges. The consistency test is used above all to assess the agreement between judgements from two different people. A value close to 1 for these tests is a sign of good reliability.
Internal consistency. The various factors making up a given dimension must be homogeneous since they represent the same concept, but with different formulations.
The index is sensitive if it is able to detect minimal changes in a person’s quality of life. These changes are clinically pertinent only if they are clinically detectable. According to Guyatt, the score must remain the same in people in a stable clinical state. In contrast, it must vary in those whose state worsens or improves.
Three approaches have been used up to now to measure quality of life: batteries of indices, psychometric scales, and usefulness functions. Clearly, none is a panacea. It is also helpful to undertake an exploratory study in patients with a given disease in order to ensure that the problems accompanying it can actually be represented in existing “general” tools. A specific index must be created if that is not the case.


Construction of a specific scale for secondary lymphedema of the upper limb proved necessary. Methods used to construct such a tool were based upon statements from patients concerned and/or interviews of experts. Semi-structured discussion with a panel of women with lymphedema led to the establishment of a bank of 1106 verbal quotes culminating in a list of 906 questions. Patients’ verbal quotes identified a number of physical, psychological, or social complaints, while an overall feeling of poor health emerged.
The functional effects of lymphedema on locomotor ability elude the usual norms of generic indices. Difficulty walking is due less to stiffness or pain than to heaviness of the arm.

“Walking with the arm swinging is heavy on the shoulder.”
“When I walk with my arm hanging down, it obviously swells. I feel that everything is slipping down.”

Very specific limitations emerge concerning very precise gestures: “holding the arm in the air, leaning on the arm, bending it, moving the fingers” are all difficult movements. Basic acts, such as “grasping and holding an object, opening faucets, making precise movements, opening a car or train door handle” are severely impaired. Sleep is difficult for very precise reasons. It is no longer possible to find a comfortable position and it is often necessary to give up sleeping on the side of the diseased arm and learn how to sleep on the other. If the arm “gets stuck” inadvertently, it wakes the patient up.

Restrictions in the everyday activities are all obstacles to carrying out basic tasks and can hence be used to quantify the person’s activity much more usefully than symptoms or behavior. Many gestures involved in personal care are more difficult to perform. Washing is laborious because of the need to keep the arm in extension or lean on it. “Getting out of the bath is dreadful.” “I no longer brush my hair.” “Dressing, hooking your bra, putting on a coat, putting a chain around the neck” are all difficult.

There are the usual psychological repercussions in terms of anxiety and depression. In contrast, lymphedema is accompanied by quite specific mental suffering caused by its inherent esthetic problems. Patients worry constantly, which takes on various guises:

The constant fear of an injury: “I’m afraid of catching, pricking, or scratching myself.” “I used to like to travel but now I’m afraid.”
The dread of lymphangitis and worsening of it : “I constantly think that it might get bigger.” “My only fear is paralysis.”
The feeling of being a millstone, of being a burden to everybody: “I don’t want to be a nuisance, someone to be pitied.”
Esthetic suffering is linked to what others see: “You feel really pathetic when you go to buy clothes. The salesperson, who is behind you in the fitting cubicle- its terrible.”
There is finally loss of self-esteem. You can no longer look at yourself in a mirror: “I haven’t seen myself for a year. I look in a very small face mirror to brush my teeth.”

Social consequences are the effects of lymphedema on all the potential activities of the people questioned based upon their role in society. This covers, for example, work in active individuals, housework in women staying at home, and hobbies or pastimes in the active or inactive.

Handling heavy objects at work (packages, books, pieces of equipment) is difficult. Writing and computer work are tiring. All these difficulties require a redistribution of tasks. Patients very often request a change of job assignment: “I can’t play the action woman any longer. I very much know what I need and what I don’t need, it’s quite certain: a quieter life and fewer responsibilities.”

Following the elimination of redundant or poorly expressed statements, a first 73-item questionnaire was administered to 154 patients. Factorial analysis identified the main dimensions of the disorder and 55 superfluous questions were discarded. The second questionnaire consisted of 28 items and was tested on 301 patients. This was followed by a further analysis to ensure the stability of the factorial structure, which led to the creation of a third questionnaire consisting of 27 items.


Clinicians have access to a measurement tool enabling them not only to evaluate lymphedema and its pathological effects, but also to evaluate the impact of various treatments. The quality-of-life scale in secondary lymphedema of the upper limb after breast cancer is a technological advance for the use of scientists and benefit of patients.
The practitioner chooses and modifies treatments, taking into account the variability of patients’ reactions, clinical results obtained, and implications on quality of life due to the disease and its management. The size of the arm alone cannot account for the complexity and severity of the repercussions of lymphedema on the life of patients, especially in the functional and psychological areas. Study of changes in the various components of quality of life can help the clinician to quantify the results of treatment and adjust the management and monitoring of women with lymphedema.


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