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Supportive care for soft tissue sarcoma
Supportive care helps people meet the physical, practical, emotional and spiritual challenges of soft tissue sarcoma. It is an important part of cancer care. There are many programs and services available to help meet the needs and improve the quality of life of people living with cancer and their loved ones, especially after treatment has ended.
Recovering from soft tissue sarcoma and adjusting to life after treatment is different for each person. Recovery depends on the extent of the disease, the type of treatment and many other factors. The end of cancer treatment may bring mixed emotions. Even though treatment has ended, there may be other issues to deal with, such as coping with long-term side effects. A person who has been treated for soft tissue sarcoma may have the following concerns.
Lymphedema is swelling that occurs when lymph fluid builds up in the soft tissues of the limbs. It may occur when surgery or radiation therapy has been given to treat soft tissue sarcoma. It occurs more often in lower limbs than in upper limbs after radiation therapy. Lymphedema can become a long-term problem for some people.
Symptoms of lymphedema in a limb may include:
- feeling of fullness, puffiness, heaviness or aching
- tight skin, clothing or jewellery
The goal of treating lymphedema is to prevent further fluid buildup, to reduce swelling as much as possible and to prevent changes that may become hard to reverse. Managing lymphedema may include a combination of:
- raising, or elevating, the affected limb
- mild exercise
- light massage and physical therapies
- using a compression garment or compression pump
It is important to protect the limb from injury.
How a person feels about or sees themselves is called self-esteem. Body image is a person’s perception of their own body. Soft tissue sarcoma and its treatments can affect a person’s self-esteem and body image. Often this is because cancer or cancer treatments may result in changes in body function and mobility or loss of a limb.
Some of these changes can be temporary. Others will last for a long time and some will be permanent.
For many people, body image and their perception of how others see them is closely linked to self-esteem. It may be a real concern for them and can cause considerable distress. They may be afraid to go out, be afraid others will reject them and feel angry or upset. Losing the function or mobility of a limb, or losing the limb itself, can be especially distressing. It often takes time to grieve the loss of function, mobility or a limb and for the person to start coping with the emotional and practical problems of an amputation.
Some people feel pain or changes in sensation in the limb that has been amputated. This is called phantom limb pain or phantom limb phenomenon. It occurs because nerves are cut and damaged during surgery, which may cause the body to send abnormal nerve impulses.
The symptoms of phantom limb pain in the amputated limb may include:
Phantom limb pain usually occurs 1–4 weeks after surgery and usually lessens during the first year. For some people, phantom limb pain can become a long-term problem. Phantom limb pain may be made worse by stress or fatigue.
Phantom limb pain may be managed in a variety of ways. Treatment options for phantom limb pain may include:
- Taking pain-relieving medicines and muscle relaxants.
- An elastic stump shrinker (which puts pressure on the stump), massage, heat or distraction techniques may help reduce phantom limb pain.
- Occasionally more surgery is needed to revise the stump. A higher-level amputation may be needed if the phantom limb pain cannot be managed.
Pain specialists may be able to help treat long-term phantom limb pain.
Questions to ask about supportive care
To make the decisions that are right for you, ask your healthcare team questions about supportive care.
Treatment given to improve the quality of life of people who have a serious illness (such as cancer).
The goal of supportive care is to prevent or treat as early as possible the symptoms of a disease, the side effects caused by treatment and the psychological, social and spiritual problems related to the disease or its treatment.