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, depending on where the cancer was in your body, the stage of the cancer, the organs and tissues removed during surgery, 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.

Rehabilitation can be an important part of healing after treatment, especially for soft tissue sarcoma of an arm or a leg. The type of rehabilitation you have will depend on where the cancer was in the body and the type of surgery done (limb-sparing surgery or an amputation).

Find out more about rehabilitation after soft tissue sarcoma treatment.

How a person feels about themselves is called self-esteem. Body image is how a person sees 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 body changes, such as:

• scars and skin changes
• hair loss
• changes in how your body moves and works
• loss of a limb

Some of these changes can be temporary. Others will last for a long time or be permanent.

For many people, body image and how they think other people see them is closely linked to self-esteem. It may be a real concern for them and can cause considerable distress. They may feel angry or upset, afraid to go out or afraid others will reject them, even if the effects of treatment may not show on the outside of the body. 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.

Find out more about how to cope with problems of self-esteem and body image.

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 happens 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:

• pain
• burning
• throbbing
• cramping
• itching

Phantom limb pain usually happens 1 to 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:

• pain-relieving medicines and muscle relaxants
• an elastic stump shrinker that puts pressure on the stump
• massage, heat or distraction techniques
• more surgery – a higher-level amputation may be needed

Pain specialists may be able to help treat long-term phantom limb pain.

Some types of soft tissue sarcoma are more likely to come back (recur).

It can be very stressful living with the possibility of the cancer coming back, and going for regular doctor’s appointments may make it harder. It may be a constant reminder. But regular follow-up with your doctor and other members of the healthcare team increases the chance that the cancer will be found earlier, when it is easier to treat.

You can use these visits to discuss your concerns and ask questions. Report any signs and symptoms that may suggest the cancer has returned as soon as possible.

You may want to talk to a counsellor or a close friend if fear of the cancer coming back is stopping you from moving forward. You can also join a cancer survivor support group or online community. Talking with others who have the same fears may be helpful. Look for ways to help you cope, manage stress and improve your health. You might try some or all of the following:

• meditation
• prayer (some may find comfort in spiritual beliefs)
• imagery and relaxation
• being physically active
• eating a healthy diet

Find out more about worrying that the cancer will come back.

To make decisions that are right for you, ask your healthcare team questions about supportive care.