Series No 50 - Having radiotherapy to a limb : University College London Hospitals NHS Foundation Trust

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This page has been written for patients who are having radiotherapy to a limb (arm or leg) for a soft tissue sarcoma or a bone sarcoma. It explains what the treatment involves, describes side-effects you may experience during and after treatment, and how best to cope with them.

We understand this is a worrying time for patients and their families, and we hope this page can help to answer any questions you have. If you have any questions about the treatment or information on this page, please speak to the team looking after you.

We want to involve you in all the decisions about your care and treatment. If you decide to go ahead with treatment, by law, we must ask for your consent and will ask you to sign a consent form. This confirms that you agree to having the procedure and understand what it involves.

Staff will explain all the risks, benefits and possible alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment, please do not hesitate to speak to the team looking after you.

During your time with us we aim to provide the highest standards of care and support you in your decisions regarding your treatment. We will respect your dignity, individuality, and personal preferences.

Your care will be managed and given by therapeutic radiographers, doctors, and nurses. You will meet both male and female healthcare professionals while on treatment. If you have any concerns about this, please talk to the radiographers about it. We try to be sensitive to your needs, so please do not hesitate to discuss things with the team caring for you.

If you are of an age where you can get pregnant (12 to 55 years old) and capable of becoming pregnant (you have a womb), you will be asked to confirm that you are not pregnant.

You must tell the staff immediately if there is any chance of you being pregnant at any time during your treatment. You should not become pregnant for at least four months after radiotherapy.

If you have external reproductive organs (testes), you should not conceive a child for at least four months after radiotherapy treatment. All patients should use reliable contraception throughout this period. If you have any further questions or concerns about this, please talk to your clinical oncologist, specialist radiographer or specialist nurse involved in your care.

Radiotherapy appointments:

All take place in the Radiotherapy Department, basement floor, main UCH hospital building.

Radiotherapy is the specialised treatment of cancer (and some other diseases) using high energy radiation beams. These can either be x-rays (also called photons), electrons or protons. X-rays and electrons are delivered from a machine called a linear accelerator whilst protons are delivered from a machine called a cyclotron.

University College Hospital Trust is one of two NHS proton beam therapy (PBT) centres in the UK, alongside The Christie in Manchester. Proton beam therapy (PBT) is an advanced form of radiotherapy. However, it is not appropriate to treat all tumours with proton beam therapy. The most appropriate treatment for you will be decided by your clinical oncologist and discussed with you.

Radiotherapy works by damaging cancer or tumour cells in the part of the body being treated. The radiation stops the cells from dividing and growing. Radiotherapy can also damage nearby normal cells. The normal cells are more likely to recover from the effects of the radiation than the cancer or tumour cells. The clinical team take great care to reduce the radiation dose to a person’s healthy cells.

Radiotherapy does not hurt, and it will not make you radioactive. You will be completely safe to be around family, friends, and pregnant people. You will feel nothing from the treatment and the machine will not touch you. It is rather like having an ordinary x-ray. The most important thing is for you to lie very still for treatment.

Treatment is given daily Monday to Friday, including Bank Holidays. A course of treatment can last up to seven weeks. Your treatment schedule will be decided by your doctor and confirmed on your first treatment visit to the radiotherapy department.

Before beginning radiotherapy, your treatment must be carefully planned. There are many different things to consider when deciding upon the best treatment position for you. We need to make sure other parts of your body are not in the way, also to ensure the treated area is kept very still and that you are as comfortable as possible.

It is important that your surgical scars are fully healed and there is no swelling (inflammation) of your limb. If you have any questions about this, please call your specialist sarcoma radiographer or call the radiotherapy department on 020 3447 3700/3701 and ask to speak to the radiotherapy pre-treatment radiographers.

Your first visit will be to the radiotherapy pre-treatment department. You will have a plastic mould (also called an immobilisation device) made of your limb to ensure you are in the correct treatment position. You will wear the mould each day during your treatment. The mould has three purposes:

To help you keep still during your treatment
To ensure you are in the same position each day for treatment
To prevent having to draw treatment marks on you, as they are drawn on the mould.

To make the mould, we use a sheet of thermo-plastic material. The plastic sheet is hard when dry. It is gently heated and becomes soft and flexible. The sheet is placed over your limb. It will feel warm. The radiographers will mould the sheet around your limb and hold it in position, for twelve minutes, until it begins to harden. In addition to the mould, we may need to make a personalised leg or arm rest for you.

After your mould has been made you will be taken to the CT scanner for a radiotherapy CT planning scan. The scan gains information of the area to be treated whilst you are lying in the treatment position.

When it is time for your scan the radiographers will take you in to the CT scanner room. The radiographers are there to explain the procedure and to answer any questions you may have. You will be asked to change into a hospital gown and the radiographers will tell you which clothing to remove. The radiographers will help you on to the CT couch, and they will position the mould in place. It is important to lie still during the planning procedure so that accurate measurements can be taken. Please tell the radiographers if you are uncomfortable and they will adjust your position. The entire planning procedure will take about thirty minutes.  

Using a felt-tip pen, the radiographers will place some temporary marks on your skin and mould and take some measurements. These are for reference only and can be removed when you go home. If you have had surgery, sticky wire will be placed along your scar. The radiographers will then leave the room to perform the CT scan. You may need a cannula inserted into your arm to introduce some dye that shows up on the CT scan. If you need a cannula, the radiographers will explain what is happening before and during the process.

The scan will take approximately five to ten minutes. You will feel the bed move in and out of the scanner. You will pass through the scanner several times. The radiographers will be watching you the entire time. You will feel nothing in the scan. All we ask is that you lie still and breathe normally. When the scan is done, and the radiographers have checked the images they will re-enter the room. The radiographers will then mark several specific points (also called tattoos) on your skin. These are alignment marks to ensure each treatment is accurate. The marks are permanent and are done by placing ink on the skin and then gently scratching the surface of your skin with a fine needle.

Before you go, you will be given an appointment card with the date and time for your next visit, which will be your first treatment.

Some sarcomas will be treated with chemotherapy given at the same time as radiotherapy. Your clinical oncologist will inform you if this is the case and you will be given further information. The radiotherapy department and the chemotherapy day unit, or ward, work together to arrange your appointments.

With chemotherapy, there is a risk of infection known as neutropenic sepsis. If you feel unwell or have a temperature above 38 degrees, please tell your team or call the UCLH 24 Hour Acute Oncology Number: 07947 959020.

You will be given detailed fact sheets about the chemotherapy drugs and their side effects by the chemotherapy nurses. If you have any concerns or questions, please speak to a member of staff.

Treatment starts two to three weeks after your planning scan. Patients will normally receive their treatment as an outpatient. Treatment is every day, Monday to Friday, including Bank Holidays. Your clinical oncologist or specialist sarcoma radiographer will have already told you how many treatments you will be having. The treatment radiographers will explain the procedure to you and answer any questions you may have.

On the day of your first treatment, you will come to the radiotherapy department at UCLH main building and take the lift to the basement (B). If you are an inpatient, the radiotherapy team will arrange for you to be brought down for treatment.

The radiographers will have the details of your treatment which the doctor has carefully planned. They will explain to you exactly what will happen. The radiographers will discuss the treatment and how to minimise side effects. They will also check whether you are still happy to go ahead with your treatment. This is the ideal opportunity to ask any questions you may have.

The radiographers will take you to a changing room and ask you to change into a gown. When they are ready, they will take you into the treatment room.

In the treatment room, you will notice the bed is setup the exact same way as the CT scan, but the machine is different. It is more open and will move around you. You will be helped onto the bed and the radiographers will ensure you are in the correct treatment position by aligning the marks on the mould and the tattoo marks on your skin with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan.

When you are in exactly the right position and final verbal checks have been made, the radiographers will make sure you are all right and then leave the room to switch the machine on. Before your treatment the radiographers will need to take images of the area you are having treated. These images do not monitor your condition but are purely to check you are in the correct position and that the beam is directed to the correct area of your body.

To give you the best treatment you will be treated from several different angles. The treatment machine will move around you but will not touch you. There is nothing to see or feel when the machine is delivering the treatment. You may hear a buzzing noise. All we ask is that you keep still. The radiographers will be watching you all the time on a closed-circuit television. Each treatment session takes about 30 minutes.

If you want the treatment to stop at any time, please wave your hand to let the radiographers know and they will come to you.

Remember that radiotherapy does not hurt, and it does not make you radioactive. You are safe to be with other people, including children and pregnant women, during and after your course of radiotherapy.

There will be some side effects which will gradually appear during your course of treatment. These effects will vary from patient to patient. There are side effects occurring during treatment, some happening soon after treatment, and some appearing months or years after radiotherapy.

The risk and severity of side effects occurring will depend on the dose of radiotherapy given and the exact area which receives treatment. Your doctor, or specialist sarcoma radiographer, will discuss the risks of treatment with you before you sign a consent form. However, there will still be plenty of opportunity to talk about anything that you feel needs further discussion. The main side effects that occur during treatment are:

Skin changes

The skin in the area being treated will gradually change colour. Your skin will gradually become pink /red or darker, depending on your skin colour. You may get some dry peeling of the skin in the treatment area, which may become itchy.

Some patients may experience peeling of the skin which can be very sore and look quite alarming. This is normal and will heal over a few weeks. If your skin peels and is sore, you will be seen by the radiotherapy review team for specialist skin care advice and support.

During treatment we advise that you wash normally using warm water and the soap products you would normally use. Gently pat your skin dry with a soft towel.

Radiotherapy skin reactions cannot be prevented, but to minimise any skin irritation we recommend using a moisturiser of your choice. Use the moisturiser frequently and gently smooth it on to your skin until it is absorbed. You do not need to wipe the moisturiser off before treatment, but please do not apply moisturiser immediately before their treatment.

If your moisturiser starts to irritate your skin or your skin peels and is sore, stop using the moisturiser and let your team know. They will refer you to the radiotherapy review team for appropriate skin care.

If you do not currently use a moisturiser, then speak with your radiotherapy team and they will be able to suggest some options for you. We recommend that you patch test any new moisturising product you are using on an area of your body that is not the treatment area, to ensure you do not have a reaction.

How can I help myself?

By following this advice, you may keep your skin in good condition and feel more comfortable. This only applies to the skin in the area being treated.

Wear loose-fitting, natural fibre clothing, such as cotton or silk, next to the skin.
Avoid tight clothing as this may rub your skin and make it sore.
You can continue to use the deodorant you normally use unless it irritates your skin. If your skin becomes too sore or peels, stop using deodorant.
You may go swimming if your skin has fully healed from surgery and is not peeling from treatment. Always shower immediately afterwards to wash off any chlorine and apply moisturiser. Please stop swimming if it irritates your skin.
Do not apply any cosmetics, perfumes, or aftershaves to the skin in the treated area.
Avoid the use of plasters in the area being treated.
Avoid rubbing or scratching the skin in the treatment area.
Avoid extremes of temperature such as heating and cooling pads.
Avoid sun exposure and protect the area from direct sunlight. Continue to protect the area from the sun for at least one year after you have finished treatment. Because your skin will be more sensitive, always use a sunscreen with a high sun protection factor.
Do not wet shave or use hair removal creams on the treated limb as these can irritate your skin. You may use an electric shaver for removing hair in the treatment area during your radiotherapy unless it is found to irritate the skin.
Do not smoke. Smoking may reduce the effectiveness of treatment and can often make the side effects much worse. If you need help to stop smoking, please ask as we offer a stopping smoking service here.
To improve your overall health, try to drink six to eight glasses of water a day and eat a nutritionally well-balanced diet.

Hair loss

You will only lose hair in the area being treated. Hair loss will occur approximately two to three weeks into treatment. Hair might not grow back completely in the areas which have had a very high dose of radiation. Your doctor will advise you if the hair is likely to regrow.

Swelling of the limb

You may experience swelling and tenderness in your limb as treatment progresses. This is due to inflammation of the tissues caused by the radiotherapy. This will settle after treatment has finished, but in a few patients this may persist. Try to elevate your limb as much as possible.

Stiffness

You may experience stiffness in your limb. This is a normal reaction. This is due to the radiotherapy causing slight swelling of the underlying muscle tissue. Continue to regularly perform the stretching exercises that have been given to you, and continue to move the areas much as possible, to try to maintain normal movement.

Tiredness

Tiredness is a very common side effect of radiotherapy. You may feel more tired than usual and have less energy, both during and after treatment. Do not worry, this is normal. It is usually a combination of travelling to hospital every day, the side effects of treatment, coping with a diagnosis of a tumour and continuing with normal life. Fatigue usually improves between six months to a year after treatment.

We recommend that you listen to your body. Do as much as you feel you can and rest when you need to. Pick out the things that you enjoy and try to ask others for help with other tasks. Try to get a good night’s sleep where possible. Have enough water to drink to prevent tiredness from dehydration. Gentle exercise has been found to improve fatigue levels in patients and we would recommend walking as a good form of exercise.

Please tell us if you are finding things difficult, as we will be able to offer practical advice and information.

At your first treatment appointment the radiographers will discuss the treatment with you and explain any possible side-effects you may experience. They will see you every day and ask how you are and how you are feeling.

During treatment you will be seen on a weekly basis by your specialist sarcoma radiographer and the radiotherapy review team, who will monitor your side effects and review your progress.

Late side effects incurred during treatment can appear to develop many months or years after radiotherapy has finished. They are the hardest to accurately predict and, unfortunately, when they do occur, they are usually permanent. Your doctor will discuss the possibility of these late side effects with you, at the time you sign your treatment consent form. Possible late side effects may include:

Swelling of the limb (Lymphoedema)

There is a possibility that the limb below the level of surgery may be inclined to swell in the future. This is due to the build-up of lymphatic fluid (a clear fluid that helps fight infection and disease), which flows through lymphatic vessels. The lymphatic vessels are part of the lymphatic system, which helps to fight infection and maintains a balance of fluids in the body.

Radiotherapy significantly increases the risk of swelling by causing scar tissue to form which interrupts the normal flow of the lymphatic fluid. 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 is being treated with radiotherapy. If it is considered a significant risk for you, your doctor will warn you.

Prolonged standing and being overweight will increase the tendency to 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 that you be seen by our 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 skincare, 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 use of 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.

This page deals with the physical aspects of your treatment, but your emotional wellbeing and that of your family is just as important. Having treatment can be deeply distressing for some patients.

Within the radiotherapy department there will be access to and support from your specialist sarcoma radiographer, the Macmillan radiotherapy information and support team, the radiotherapy review team, and the treatment radiographers. However, if you feel you require further medical or emotional support you can be referred to a variety of health professionals who can help with any worries or difficulties you may be having.

The radiotherapy team are here to make sure your treatment goes as smoothly as possible and to support you through this difficult period. We will always try to help you with any questions or problems you may have.

The side effects you are experiencing will continue after treatment has finished. It is common to experience a worsening of the skin reactions for about 10-14 days after radiotherapy. Your specialist sarcoma radiographer will call you around this time to assess your progress and provide information and guidance if needed.

Your initial follow-up appointment with the radiotherapy doctors will occur four to six weeks after your treatment has finished. This may be a telephone or face-to-face appointment. Face-to-face appointments will be held in the UCLH Macmillan cancer Centre.

Your progress will be kept under regular review with the Sarcoma team for 10 years in total. We will see you in clinic:

Every three months for the first two years after radiotherapy.
Every six months for years three to five after radiotherapy.
Once per year for five years until 10 years post treatment.

At each of these appointments you will be required to have a chest X-ray so that we can assess your lungs, and we will perform a physical examination of the treated area.

(To be filled out by patient...)

My Clinical Oncoligist is:

My Clnical Nurse Specialist (CNS) is:

CNS contact number:

My Macmillan Specilist Sarcoma Radiographer is:

They can be contacted on 07929 176769

Radiotherapy Review Team (via Radiotherapy Reception)

t: 020 3447 3700/3701

Radiotherapy Reception

t: 020 3447 3700/3701

Radiotherapy Macmillan Information and Support Team

e: uclh.radiotherapyinformationandsupport@nhs.net

Out of hours oncology advice number (available 24 hours)

m: 07947 959020

UCLH Lymphoedema Clinic Secretary:

t: 020 7380 9325

Lymphoedema Nurse Specialist:

t: 020 3456 7890 ext 4324

If you have any concerns that you would like to discuss in confidence, please contact our PALS (Patient Advice and Liaison Service) for information and advice.

t: 020 3447 3042

w: www.uclh.nhs.uk

Sarcoma UK

t: 0808 801 0401

e: supportlinr@sarcoma.org.uk

w: www.sarcoma.org.uk

The London Sarcoma Service

t: 020 3447 4821

w: www.londonsarcoma.org

Maggies (Providing cancer information and support in centres across the UK and online)

w: maggies.org

Young Lives vs Cancer (formerly CLIC Sargent)