A study looking at the how people find managing lymphoedema after surgery for breast cancer

The study team found women accepted and adjusted to life with lymphoedema differently. Those who developed a daily routine for managing their lymphoedema and who understood that it was up to them to manage the condition felt more in control and able to regain a normal life.

The study team interviewed 21 women. They asked them about:

• their experience of self managing their lymphoedema
• changes in the symptoms of their lymphoedema
• how they felt about their arm swelling

From the interviews the team identified some factors that could help or block how they dealt with their self management.

Making self management a part of the daily routine
Women reported that self management was easier if it became a part of their daily routine rather than a focal point. This helped to make it a normal part of their life.

For example one woman reported that doing the exercises as soon as getting out of bed became routine. This meant she didn’t need to think about doing it later on.

Some women said that a lack of routine could be a leading reason why regular self management wasn’t done.

Recognising the benefit of self management
Women said that seeing and recognising the benefits of self management was an encouragement to continue.

The most common reported benefits were:

• reduction in the size of the arm
• softer skin and tissue
• improved appearance
• decrease in the ache and heaviness of the arm

A less common reported benefit was feeling secure and confident about being able to control the swelling.

Some reported that recognising symptoms, such as swelling, ache and heaviness of the arm, often triggered an increase in the frequency of self management or starting to do self management.

Fear of symptoms getting worse was also an influence to do self management to prevent this happening.

Ownership – choosing to do self management
Women believed that having a positive attitude to self management and doing it for personal benefit were important factors in controlling the lymphoedema.

Many said that taking ownership of self management was linked to successful management of lymphoedema. And that negative attitudes were linked with finding it difficult to do the self management activities.

Some women had reached a point where their lymphoedema and the self management was a normal part of their life.

Knowledge and understanding
Knowledge about lymphoedema and its treatment was considered essential for successful self management. There are three things women felt important for this:

• recognising the value of treatment to reduce and control swelling
• “listening to your body” and recognising the swelling can go up and down
• adjusting self management activities to control the symptoms

Having a lot of information available on lymphoedema was very much appreciated.

Women reported that a lack of knowledge and understanding was frustrating and unhelpful.

Some women struggled with the treatment techniques and felt embarrassed to admit they couldn’t learn or remember how to do them.

Self management was encouraged by having regular reviews of progress and support from a health professional who specialised in lymphoedema.

Problem solving
This was viewed as an essential part of taking ownership of and becoming skilful in self management.

Women described many examples of finding practical solutions. Such as using clothes and colours to disguise the swelling and compression sleeve (hosiery).

Time required for treatment
There were competing commitments that limited the amount of time to do self management. Elements of self management that were considered to be easy or providing a benefit were ranked higher.

Compression hosiery was considered the quickest and easiest treatment. As it is usually only put on once a day and then left on during waking hours.

Compression sleeves
Compression sleeves (hosiery) are visible and so draw attention to the lymphoedema. Women were frustrated about having to explain about their lymphoedema and felt uncomfortable about revealing they had had breast cancer. They tried to avoid questions and felt the need to prepare a story just in case.

Some believed their swelling was only visible when they had the hosiery on. And this influenced their decision to wear the hosiery or not.

Judging how the arm looks and feels
The team also asked how women determined their swelling was getting better or worse.

They couldn’t say or explain immediately how they did so. Many considered that the most accurate way was having the swelling measured by a health professional such as a lymphoedema nurse specialist.

The researcher asked women to describe the difference between their swelling on a good and a bad day. They identified 4 features they regularly used.

Size 
How clothes and jewellery fitted. And comparing arms or hands to see the size difference between them.

Appearance
Looking at how visible the knuckles and veins on the hand and wrist were. Some women moved their wrist and elbow to see the muscles move in the forearm. On a good day the muscles were more visible.

Feeling and consistency
Women gently pressed their fingers and thumb over the swollen area to see how it changed from day to day. Words such as ‘soft’ or ‘normal’ were used on good days. ‘Fat’, ‘tense’ and ‘hard’ were used when the swelling was worse.

Internal sensation
This is how the arm and swelling felt on a daily basis. Most commonly used terms for bad days were a sense of fullness, ache, internal pressure, tension, tightness or heaviness. These sensations appeared to be triggered by certain activities such as household chores, writing or computer work.

The team said that the range of acceptance and adjustment shown by women appears to have an impact on their ability to self manage their lymphoedema. Health care professionals such as lymphoedema specialists and cancer nurses had a valuable role in providing information and support for these women. 

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.