Having radiotherapy to a limb

Introduction

You have received this information sheet as radiotherapy has been recommended as part of your treatment plan. It is primarily aimed at patients who are receiving radiotherapy for a soft tissue sarcoma or a bone sarcoma in the arm or leg.

This leaflet contains information and advice to help you look after yourself during and after your radiotherapy treatment. It covers the commonly seen side effects of treatment that you may experience and how best to cope with them. It is important to remember that everyone has their own response to radiotherapy, so the side effects you experience may differ from that of anther person.

If you have any questions or concerns about the information given to you, or any aspect of your treatment, please speak to a member of the team. It is important that you have all the information about the treatment you feel you need, before it starts.

For Sarcoma patients, your Key Worker during radiotherapy is Charlotte Harvey, Advanced Practice Radiographer in Sarcoma Oncology, 01223 216554. An answerphone is available for non-urgent messages.

All cancer patients are entitled to free prescriptions. An application form (FP92A) can be got from the oncology centre or your doctor’s surgery.

What is radiotherapy?

Radiotherapy uses carefully measured doses of strong x-rays to treat diseases, mainly cancer. It is usually given in small doses over a number of weeks and works by causing damage to the cells within your body. Cancer cells are much less able than normal cells to repair the damage, meaning more of the cancer cells are destroyed. So the aim of radiotherapy is to eradicate any cancer cells present within the treated area.

Radiotherapy may be given after surgery to reduce the risk of the cancer returning. Alternatively, it may be given before an operation. This is either to shrink the tumour and make it easier for the surgeon to operate successfully, or to avoid having to amputate the limb.

Although the radiotherapy treatment area will be kept as small as possible, some normal tissues will be included, causing side effects. In recommending your treatment, your radiotherapy doctor (Clinical Oncologist) will have weighed up the anticipated risks and benefits and will happily discuss them further if you wish. Once you have all the information about the radiotherapy treatment and have no unanswered questions, you will be asked to sign a Consent Form with your doctor saying you give us permission to plan and deliver your radiotherapy treatment.

How is the radiotherapy planned?

Radiotherapy treatment is tailored to the individual patient and requires careful planning. The first appointment involves a CT scan in the radiotherapy department known as the radiotherapy planning scan. The radiographers will also take your photograph, which is used as part of an identification safety check each day prior to your radiotherapy.

It is usually necessary to apply some tiny permanent marks (referred to as tattoos) on your skin. These are important reference marks used by the radiographers to help them accurately deliver your radiotherapy. They are done using a drop of ink and the tip of a fine needle. If you need tattoos, this will be discussed during the consent process.

Radiotherapy is a very precise treatment, so we need to ensure that the limb being treated is positioned optimally and remains stable during treatment delivery. You may have a custom plastic mould made that you will wear for your radiotherapy planning scan and during each radiotherapy treatment. The mould is made from a piece of thermo-plastic material. The plastic is hard when dry and becomes soft and stretchy when placed in warm water. Once moulded around the limb it is held in place until it begins to dry and harden again.

Once the scan is complete you will be free to leave. Your doctor will use the CT images to identify the area requiring treatment. A radiotherapy plan is calculated in your absence and the radiotherapy normally starts a couple of weeks after your radiotherapy planning scan.

What happens during treatment?

Before your first radiotherapy treatment, a member of the team that will be treating you will have a discussion with you. This will cover what you can expect to happen each day when you have your radiotherapy and how to minimise any side effects that it may cause. They will also check that you are happy to go ahead with your radiotherapy and this is an ideal opportunity to ask any further questions that you might have.

Inside the treatment room, the radiographers will position you correctly on the treatment couch before leaving the room to switch the machine on. You will be alone in the treatment room but the radiographers will be watching you over the closed circuit television camera system. They can also talk to you through an intercom if you want them to. If you need help, raise your arm. The machine can be switched off and the radiographers can come and assist you.

Images are often taken first to check your position. If the radiographers are happy with the images they will proceed to deliver your radiotherapy treatment. Otherwise, your position may need to be slightly adjusted and then another image taken before radiotherapy can be given.

The machines make a buzzing or tapping sound when delivering the radiotherapy, but it is completely painless and you do not have to hold your breath. All we ask is that you keep still and breathe normally. You will typically be in the room for about 15-20 minutes.

You will not be radioactive as a result of radiotherapy and are safe to mix with other people including children and pregnant women.

How many treatments will I have?

Many factors affect the total number of radiotherapy treatments required including the type of cancer that you have. Radiotherapy is usually given once daily Monday to Friday over 5-6½ weeks but this will be confirmed by your oncologist.

How are the appointments arranged?

We will attempt to accommodate your time preference wherever possible. Please try to be as flexible as you can and give priority to your radiotherapy treatment over other general appointments. The time may vary from day to day due to the number of patients on the unit.

You will see one of your treatment team in the radiotherapy review clinic once a week during your radiotherapy to see how you are and manage any side effects that you might be experiencing. However, if you need to be seen by one of the team at any point, just ask one of the treatment radiographers.

What are the side effects of treatment?

Some of the common side effects from radiotherapy are listed below, but even these can vary between people depending on the area being treated and the radiation dose required. The early side effects tend to appear gradually 2-3 weeks into treatment. They persist or worsen slightly for 7-10 days after the radiotherapy has finished and then gradually subside over the next 4-6 weeks. Radiotherapy may also cause some late side effects, which may present months or years later.

Smoking increases side effects during radiotherapy, so the best time to stop is before you start your treatment. It can be hard to stop but there is support available from your GP or local stop smoking service. A helpline number is available at the bottom of this information sheet.

Early side effects

Skin reaction

Radiotherapy will only affect your skin within the treated area. You may notice that the skin here becomes more sensitive, red, warm, itchy or dry. This is a normal reaction. Sometimes dry peeling of the skin occurs. If the thigh is being treated, the skin may peel and “weep”, which can be very sore. If the perineum (the area of skin between the anus and the genitals) is included in the treatment field, this may become red and inflamed.

It is advisable to follow the skin care advice from the beginning of radiotherapy treatment and for several weeks afterwards.

During radiotherapy we advise you to:

• Wash daily with a mild unscented soap and warm water and pat dry with a soft clean towel or air dry.
• Try to avoid heavily scented bath gels or oils and avoid soaking in a hot bath as this will irritate your skin.
• Apply a gentle moisturiser to the treated area twice daily e.g. E45® or Diprobase®. (we do not recommend Aqueous Cream as a leave on moisturiser) If the skin becomes too sore and tender stop using the moisturiser and we will advise you further.
• Deodorant may be used unless irritation occurs.
• Do not use wax or hair removal creams or products.
• The use of adhesive tapes and dressings in the treatment area should be avoided where possible, as the skin will be more fragile there. If tape needs to be used, try and secure it away from the treatment area.
• Try to avoid sun exposure on the treated area where possible, and for about one year after treatment. Radiotherapy causes changes to the skin which make it more sensitive to the sun. Once your skin reaction has settled following treatment, we recommend that you always use a high factor sun block (F40-50) in strong sunlight.

Hair loss

Radiotherapy can cause body hair to fall out in the treated area only. This tends to occur 2-3 weeks into treatment and may be temporary or permanent. Your doctor will advise you if any lost hair is unlikely to regrow. Radiotherapy to the arm or leg does not cause hair loss on the head.

Swelling of the limb

You may experience swelling and tenderness in your limb as radiotherapy progresses. This is normal. It is due to inflammation of the tissues caused by the radiotherapy. This normally settles after treatment has finished but in a few patients this may persist.

Stiffness

You may experience stiffness in your limb. Again this is a normal reaction and due to the effects of the radiotherapy causing slight swelling on the underlying muscle tissue.

Tiredness

Tiredness is one of the most common side effects of radiotherapy. Energy required by the body to heal itself, travelling to and from hospital, and changes to your daily routine and sleep pattern may all contribute to fatigue.

Listen to your body. You may need to rest and relax more than usual, particularly if you are travelling long distances to the hospital. However it is good to maintain a level of physical activity each day if you feel able. This doesn’t need to be strenuous, for example gentle walking or light tasks around the home. Don’t be afraid to ask friends and family for help.

Reduced appetite

You may feel less like eating when you have radiotherapy. It is important that you try to maintain a healthy balanced diet to help you feel stronger and more able to cope with treatment. You may prefer to eat high calorie small meals and snacks regularly throughout the day. Nutritional supplements and fortified drinks can also help.

Drinking plenty of fluids will help you stay well hydrated. This can also help minimise the effects of some other radiotherapy reactions like tiredness.

Late side effects

Late side effects can occur months or years after radiotherapy has finished. The degree and frequency depends on the dose of radiotherapy given and the particular site treated. The effects may include:

Swelling of the limb

There is a possibility that the limb below the surgery may be inclined to swell in the future. Radiotherapy significantly increases this tendency, especially in the leg. The chances of this happening depend on several factors – not only the size and position of the tumour and the extent of your surgery, but on how much of your limb the radiotherapy has to treat. If it is considered to be a significant risk for you, your doctor will discuss this with you. Prolonged standing and being overweight will increase the tendency for swelling. Regular walking should reduce it. If your ankle tends to swell, elevation of your limb on a stool when you are sitting down, massage or supportive stockings may help. Your doctor may suggest a referral to the lymphoedema team for advice and treatment.

Fibrosis

Some patients may experience long-term fibrosis or thickening of the muscle and tissue that has been treated. The skin in the area being treated may feel “leathery” due to a loss of elasticity and suppleness. Regular stretching exercises, good skin care, the use of water-based moisturisers and sun avoidance can minimise these effects.

Fracture

There is a small risk that the bone in the area treated will be at an increased risk of fracture, and there may be problems with healing.

Second malignancy

The radiotherapy does carry a small risk of inducing a new different cancer in the treated area. This is something that may happen many years later, but it is a small risk for most patients. If you have any concerns about this, please discuss it with your medical team.

Psychological effects

This information sheet deals mainly with the physical and practical aspects of your radiotherapy treatment, but the emotional wellbeing of you and your family are just as important. Having treatment can be deeply distressing for some patients. It is not unusual to feel overwhelmed by different thoughts and feelings following a cancer diagnosis. Therefore, it is important to look after yourself during and after treatment. Advice and support is always available if you are finding it difficult to cope. In addition to your advanced practice radiographer and specialist nurse team there are many resources available for patients and their families and carers to cope with the emotional impact of cancer. Ask one of the treatment team or contact the Macmillan information pod, Maggie’s Centre or the Cambridge Cancer Help Centre for more information.

Support

The Sarcoma team is here to make sure your treatment goes as smoothly as possible and to support you through this difficult period. However, if you require further medical support, we can refer you to a variety of healthcare professionals that can help with any worries or difficulties you may be having. If you have any worries or questions about any aspect of your treatment, please do not hesitate to contact one of the team.

Charlotte Harvey
Advanced Practice Radiographer - Sarcoma
01223 216554 (direct line)

Dochka Davidson
Sarcoma Clinical Nurse Specialist Team
01223 348126 (direct line)

Radiotherapy Reception, Addenbrooke’s
01223 216634

Oncology Reception, Addenbrooke’s
01223 216551 or 01223 216552

Addenbrooke’s emergency 24 hour helpline for oncology patients
01223 274 224

After your radiotherapy has finished

Radiotherapy can continue to have a beneficial effect for some weeks after the completion of treatment. The side effects from radiotherapy generally persist or worsen slightly for 7-10 days after it finishes. They will then gradually subside over the next 4-6 weeks. Any side effects that occur during or shortly after radiotherapy should be temporary. However, please feel free to contact your GP or Advanced Practice Radiographer if you are worried.

Repeat prescriptions

If you need repeat prescriptions of any medication prescribed during your treatment to help with the side effects, these should be available from your GP service.

Ongoing follow-up

After your treatment, your doctor will want you to have regular check-ups. During these appointments you will be asked about your general health and wellbeing and if you have any symptoms you are concerned about. We may also ask to examine you.

You may be required to have a chest x-ray or scans depending on individual requirements. Occasionally blood tests are requested if there are specific concerns about long-term side effects.

Follow up appointments may initially be as often as every three-four months for the first two years. After two years the appointments will be less often but follow up is for usually for 10 years.

Follow up scan

We don’t tend to scan the primary site immediately after radiotherapy has finished partly because it continues to have a beneficial effect on the treatment area for some weeks afterwards. Radiotherapy also causes inflammation in the surrounding tissue meaning that x-rays and scans at this time are not helpful.

If you need a pre-operative scan this is generally completed approximately 4-6 weeks after radiotherapy has finished. We don’t routinely scan if radiotherapy is given post-operatively.

Again, if you have any worries or questions about any aspect of your treatment, please do not hesitate to contact one of your team.

However, if you are worried or notice any new symptoms between appointments you must let us know as soon as possible on the telephone numbers above; you don’t have to wait until your next appointment.

Further information and support

We Are MacMillan Cancer Support

The Macmillan Pod at Addenbrooke’s offers support, advice and information for anyone affected by cancer. It is located in Oncology, level 2.

They offer assistance with blue badge and Macmillan grant applications, and help with referrals and signposting to benefits advice. The service will also help find local support groups and self-management courses.

Drop by Monday to Friday to pick up information or to speak with an information specialist.

Tel: 01223 274 801

Macmillan cancer support website (opens in a new tab)

Teenage Cancer Support

The Teenage Cancer Trust help to create world-class cancer services in the UK for young people aged 13-24. They provide information and support for patients and their friends and families.

Tel: 020 7612 0370

Teenage Cancer Support Website (opens in a new tab)

Sarmoca UK

Sarmoca UK is a registered charity that offers support and information for patients and their families affected by any type of sarcoma.

Tel: 0808 801 0401

Sarcoma UK website. (opens in a new tab)

Maggie's Wallace

Maggie’s Wallace is located in the grounds of Addenbrooke’s hospital and provides free practical, emotional and social support for people with cancer and their family and friends. Their programme of support includes clinical psychology, nutrition, benefits advice and exercise, courses pre and post treatment and complementary treatments.

Cancer support specialists are on hand Monday to Friday, 9am-5pm. No appointment required.

Phone: 01223 249 220

Maggie's Centres website (opens in a new tab)

Address:

21 Milton House
Puddicombe Way
Cambridge
CB2 0AD

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one to one care is required.