Living with Sarcoma and beyond treatment

All patients who are diagnosed with sarcoma and undergo treatment will be followed up by the team regularly depending on the type of treatment.

It is important to know what to do if you notice any signs of recurrence such as:

• Breathlessness
• New swelling or lump
• Pain
• Weight loss

Contact your GP or the nurse specialist team for advice on 0113 2068966.

There are often late side effects of treatment and these can include:

• Lymphoedema – After surgery and radiotherapy for a sarcoma of a limb you may develop lymphoedema. Lymphoedema is a swelling caused by a build up of lymph fluid in the tissues. If you notice any swelling around your treatment area, you need to tell your consultant, specialist nurse or physiotherapist. You will be referred to a team of nurses who will be able to help you control the swelling.
• Secondary Cancers – As radiotherapy is an x-ray treatment, there is a very slight risk that it could cause a cancer to develop in the treatment area in the future. This risk is very small and is far outweighed by the benefits of its ability to prevent the sarcoma coming back in the future.
• Weakness of the Bones – There is a small risk of bones in the area being treated b
• Stiffness of limbs and reduced mobility – the combination of surgery and radiotherapy may affect how the affected area can move. This may happen soon after, or develop over the months following treatment. It is important to continue to move the area as much as possible. The treated area may not recover the full sensation and function that it had before. This will depend on the site and the operation you have had. Common problems include muscle weakness, muscle tightness, reduced joint movement and swelling. Physiotherapy may help with this.

Physiotherapy

There is a physiotherapy team for those with Sarcoma and patients are referred when required or on request.

Why is physiotherapy needed?

• Many soft tissue sarcomas arise within or very near to muscle tissue and are most commonly found in the limbs. An operation to remove the tumour may involve removing some muscle tissue. Patients with sarcoma may require radiotherapy following their surgery or instead of surgery. Both surgery and radiotherapy will leave your arm or leg with varying levels of soft-tissue tightness and muscle weakness and possibly with some degree of swelling.
• It is sometimes necessary for patients with sarcoma to receive chemotherapy which can lead to problems with your mobility due to tiredness and generally feeling unwell.
• the physiotherapists are available at any point during the treatment pathway. You can ask to see them as often or as little as you need. Sometimes it is necessary for the Sarcoma Physiotherapist to refer you on for physiotherapy treatment closer to where you live, or to other specialists depending on the problems identified.

Physiotherapist contact details

0113 2068117 or bleep by ringing 0113 2433144 and asking for bleep 80-1089