Supportive care for soft tissue sarcoma

Supportive care helps with the physical, practical, emotional and spiritual challenges of cancer. This important part of cancer care focuses on improving the quality of life of people with cancer and their loved ones, especially after treatment has ended.

Adjusting to life after treatment is different for everyone. Your recovery will depend on many different factors, such as where the cancer was in your body, the stage of the cancer, the organs and tissues removed during surgery, the type of treatment and side effects.

If you have been treated for soft tissue sarcoma, you may have the following concerns.

Rehabilitation is an important part of returning to the activities of daily living after soft tissue sarcoma surgery. You may be concerned about rehabilitation after limb-sparing surgery or amputation and living with an artificial limb (prosthesis).

Find out more about rehabilitation after soft tissue sarcoma surgery.

Self-esteem is how you feel about yourself. Body image is how you see your own body. They are often closely linked. Soft tissue sarcoma and its treatments can affect your self-esteem and body image. Often this is because cancer or cancer treatments change your body in different ways, 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.

Find out more about coping with body image and self-esteem worries.

Phantom limb pain can happen after a person has had an arm or leg amputated. Phantom limb pain is a feeling that the amputated limb is still there. 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 starts about 1 to 4 weeks after surgery. It usually gets better during the first year, but sometimes phantom limb pain becomes a long-term problem.

If you have phantom limb pain, your healthcare team will create a treatment plan just for you. It will be based on your health needs and other treatments you may have had. A pain specialist may be able to help treat problems caused by long-term phantom limb pain.

Treatment options for phantom limb pain may include:

• medicines to relieve pain or to relax muscles
• an elastic stump shrinker that puts pressure on the stump
• massage, heat or other pain distraction techniques
• surgery to remove part of the limb above the stump, if phantom limb pain persists and other treatments don’t work

Lymphedema is swelling that happens when lymph fluid can’t flow normally and builds up in tissues. It can happen after radiation therapy for soft tissue sarcoma if the radiation damages the lymph nodes in the area.

Symptoms of lymphedema include:

• swelling of the limb or stump
• a feeling of fullness, heaviness or aching in the limb
• skin that feels tight or stretched
• a prosthesis that will no longer fit over the stump

If lymphedema isn’t treated, it can cause damage to the tissues in the area and increase the risk of infection.

Once lymphedema is diagnosed, your healthcare team will suggest ways of treating it. This involves reducing swelling as much as possible to stop any more fluid from building up. Treatments for lymphedema may include:

• raising (elevating) the arm or leg
• wearing a compression sock or sleeve or wrapping the stump
• massage or physiotherapy

Find out more about lymphedema.

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