1 University College Hospital Radiotherapy to the breast Radiotherapy Department Patient information series 2
2 2 If you need a large print, audio or translated copy of the document, please contact us on: (Direct line) ext 73711/bleep ext 73711/bleep 1458 We will try our best to meet your needs.
3 3 Contents Introduction 5 What is radiotherapy? 5 Planning your treatment 6 Radiotherapy treatment 8 Side effects during treatment 8 Late side effects of radiotherapy 11 Specialist breast care nurses 14 Arm exercises 14 Breast prostheses 15 Support 16 After your radiotherapy has finished 16 Useful contact numbers 17
5 5 Introduction This booklet has been written for patients who are receiving radiotherapy to the breast or chest wall area. The booklet describes: What is radiotherapy. How your treatment is planned and delivered. The side effects you may experience during and after treatment, and how best to cope with them. We understand that this is an anxious time for patients. You may feel that you have been given lots of information about what needs to be done in a short period of time. We hope this booklet answers some of your questions. If you still have any questions or concerns, please let your doctor, nurse or radiographer know. We are here for you. It is very important that you should not be or become pregnant at any time throughout your course of radiotherapy and for up to four months afterwards, or whilst taking Tamoxifen. If you are unsure of this issue or if you think you may be pregnant at any time during your treatment, it is extremely important that you discuss this with your radiotherapy doctor, the radiographers or nurses immediately. What is radiotherapy? Radiotherapy is treatment using high energy X-rays, aimed specifically at the site of the cancer. It is a quick and painless procedure. Radiotherapy has clear benefits since it is a localised treatment which destroys any microscopic cells and reduces the risk of recurrence. However, no treatment is completely risk free. In recommending your treatment, your doctor (Clinical Oncologist) has weighed up the risks and benefits. Please do discuss these issues with your doctor or a member of the radiotherapy team if you are worried.
6 6 Radiotherapy is planned to treat as little of the normal body tissue as possible and treatments are usually extended over a period of weeks. This allows normal cells to recover from the effects of the radiation. Common treatment prescriptions vary between three to six weeks, treating daily, excluding weekends. The exact schedule will be decided by your doctor and confirmed on your first visit to the radiotherapy department. Planning your treatment Your first visit will be to the radiotherapy planning department and will involve having a computed tomography scan (CT Scan) to gain information of the area to be treated whilst you are lying in the treatment position. If you have had surgery, it is important that your scar has fully healed and there is no swelling (inflammation) of your breast. It is also important that you are able to raise your arms comfortably. You may find it easier to wear a skirt or trousers rather than a dress, as you will be asked to undress to the waist. You will be asked to lie on the CT scan couch on a special breast board. The radiographers may lower or raise the breast board to ensure that you are in the correct position. Then your arms will be raised and supported on arm rests above your head. Please tell the radiographers if you are uncomfortable and they will adjust your position appropriately. The position may become more comfortable as the effects of your operation wear off. The CT scan takes images of your body, using X-rays, and processes them using a computer. The system uses several X-rays, taken at different angles, to produce detailed images of the inside of your body. These precise details mean we can target your treatment more effectively. The scan usually takes less than five minutes. During your planning appointment, the radiographers will draw with pen on your skin, to outline the area to be treated. They will then do a series of measurements. A strip of sticky wire will then be placed on
7 7 your scar, around the treatment area and at various landmarks of the treatment area. The radiographers will then need to leave the room. You will feel the bed move in and out of the scanner. You will pass through the scanner a number of times. The radiographers will then re-enter the room. Finally, with your permission, the radiographers make a few very small dots on your skin. These are the co ordinates for your treatment and ensure treatment accuracy on a daily basis. The dots are permanent and are done by placing ink on your skin and then gently scratching the surface of the skin with a fine needle. As well as having radiotherapy to the breast, many patients who have had a lumpectomy will have a further boost treatment. This is to the area where the lump was first detected. Your doctor will advise you about this. The boost may be planned at the same time, or at a later stage during your treatment. Using your medical notes, the doctor will draw around the area of the breast where the lump was first detected. He/ she may ask you to point to the area of your breast where you first felt the lump. The radiographers will make a template of this area and take a digital image. Do not worry if the marks fade. The radiographers will use the template and digital image to treat the correct area. Please do not attempt to redraw the marks yourself. The whole planning procedure should take approximately an hour. It is important to lie still during the planning procedure so that accurate measurements can be taken. The radiographers are there to explain the procedure and to answer any questions you may have.
8 8 Radiotherapy treatment The radiotherapy treatment is daily, Monday to Friday. Your radiotherapy doctor will have already told you how many treatments you will be having. Your treatment will be on a machine called a Linear Accelerator. The treatment radiographers will explain the procedure to you and answer any questions you may have. For each treatment session you will be lying on the breast board in the treatment position. The radiographers will ensure you are in the correct treatment position by aligning the permanent dots on your skin with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan. When final verbal checks have been made, the radiographers leave the room. To give you the best treatment you will be treated from several different angles. The linear accelerator will move around you, but will not touch you. You will not feel anything and you do not have to hold your breath. All we ask is that you keep still. The radiographers will be watching you at all times on a closed circuit television. Side effects during treatment There will be some side effects which will gradually appear during your course of radiotherapy. 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 any side effects occurring depends on the dose of radiotherapy given. Your radiotherapy doctor will discuss this fully with you. The main side effects that occur during treatment are: Skin changes The skin in the area being treated may become red, dry, flaky and itchy. This is a normal reaction to the radiotherapy. Some patients may experience the skin becoming sore in the fold of the breast or under the armpit. They experience peeling of the skin that is weeping, which can be very sore. In this situation you will be referred to the nurses for appropriate care.
9 9 How to look after your skin During treatment we advise that you wash your skin gently using warm water and a non-perfumed soap. Pat your skin dry with a soft towel. Do not vigorously rub the treatment area. Be extra careful when drying under the breast or in any creases such as under the armpit. Do not use any deodorants, talcum powders or perfumes in the treatment area as these can irritate your skin. Do not shave or use depilatory creams under your arm on the treated side as these can irritate your skin. Some patients are worried about perspiration and not using a deodorant during radiotherapy. You can use deodorant on the unaffected side. The radiotherapy may temporarily halt the production of sweat from the sweat glands on the affected side, if the glands are treated. You may find that you perspire less on the affected side after the treatment. Aqueous cream, which will be given to you at the start of your treatment, may be applied to the treated skin. This is a simple, unperfumed moisturising cream to help prevent your skin from becoming too dry. The cream can be used from the start of treatment. Apply the cream two to three times per day. Smooth a little cream very gently onto the treatment area. Do not rub it in. If your skin becomes broken and sore do not use aqueous cream. You may be prescribed alternative creams by the doctor or referred to the nurses for advice. Please ask for a copy of our leaflet General skin care advice. Do not use any other talcs, creams or lotions in the area being treated unless advised by a member of staff. Clothing Wear loose, comfortable clothing made from natural materials. Avoid tight or underwired bras as these may rub your skin and make it more sore. During treatment you may find cotton crop tops, camisoles or vests are better than bras as they do not rub the delicate skin under the breast.
10 10 Feeling sick (nausea) Nausea is a very rare side effect of radiotherapy. However, you may feel nauseous if you are having chemotherapy or if you are feeling particularly anxious or worried. If you are experiencing any symptoms please speak to a member of staff who can refer you to a doctor for further medication. Hair loss Many women have a concern that radiotherapy will cause hair loss to their head. Please be assured that you will not lose any hair on your head from the radiotherapy, and it will not prevent regrowth of hair after chemotherapy. Radiotherapy is a very localised treatment and only affects the area being treated. You may find that the hair under the arm on the affected side will stop growing and fall out during treatment. After treatment you may experience less hair growth in that area. Appetite It is important that you try to eat a healthy balanced diet during radiotherapy to help you feel stronger and more able to cope with treatment. It is also important to drink plenty of fluids, between one and two litres a day. This can include water, squash or hot drinks. Please ask for the leaflet Eating hints for patients. Fatigue Fatigue is a very common side effect of radiotherapy treatment. Towards the end of treatment you may feel more tired than usual. The fatigue may even continue for several weeks after your radiotherapy has finished.do not worry, this is a normal reaction. It is usually a combination of travelling to and from hospital, the side effects of the treatment, coping with a diagnosis of cancer, and continuing with normal life. We advise that you do as much as you feel you can and to rest when you are feeling weary. Please ask for our leaflet Coping with fatigue and tiredness.
11 11 Late side effects of radiotherapy Late side effects can occur months or years after radiotherapy has finished. Their degree and frequency depends on the dose of radiotherapy given and the particular site that has been treated. These late effects are the hardest to predict and, unfortunately, when they do occur they are permanent. Your radiotherapy doctor will have explained the potential late side effects of radiotherapy to you as part of the consent process. The effects may include: Radiotherapy to the breast alone: You may experience swelling and tenderness in the treated breast in the months following radiotherapy. You may also experience sharp pains and twinges on the treated side. This is normal and is due to your body healing following the surgery and radiotherapy. It should disappear in time, but if you are uncomfortable please see your GP. A few women may find the treated breast is smaller or slightly different in shape after treatment. This is caused by fibrosis or thickening of the underlying breast tissue. In a small number of cases there may be thickening of the skin. The skin may feel leathery due to a loss of elasticity and suppleness. Around ten per cent of women develop dilation of the minute blood vessels in the breast. This is not painful, but can make the area noticeably red or purple. This is called telangectasia. Dilation occurs because the capillaries are compensating for the destruction or narrowing of other blood vessels as a result of the radiotherapy. Less than five per cent of women may develop weakening of the underlying ribs on the treated side. This may increase the risk of a fracture in later years. When treating the breast/chest wall it is not possible to avoid the lung and therefore as a result, a very small amount of lung is treated. It is rare for this to cause any problems for the majority of patients.
12 12 A few women may develop a dry cough which will improve in time. In a small minority of patients (less than three per cent) the symptoms may include a cough and shortness of breath upon exertion. Some women may experience pigmentation of the skin in the treated area. This may vary from light to a darker brown. Most women have some lymph nodes (glands) from the armpit removed during surgery for breast cancer. This is called an axillary dissection. Because of this procedure, there is a risk of swelling in the arm on the side of the operation. This is called lymphoedema. The swelling is caused by lymph fluid which arises from damage to lymphatic structures by inflammation, including infection, tumour, surgery or radiotherapy. Sometimes swelling occurs after injury or infection in the arm. Sometimes the swelling occurs for no reason. It is advisable to follow the guidelines listed below to reduce the risk of infection and swelling to your arm. The doctor will discuss the relative risks with you. Avoid carrying heavy shopping or luggage with the affected arm. Avoid allowing your arm to be used for injections or blood transfusions. Do not have acupuncture on your affected arm. Avoid having your blood pressure taken on the affected arm. Do not use a wet razor to remove hair under your arm use an electric razor or cream. Wear gloves to protect your hands whilst working in the kitchen and garden. Use insect repellent to prevent bites. Protect your skin from sunburn.
13 13 If you cut or scratch your hand or arm, wash the area well and apply antiseptic. Cover with a plaster. If the area becomes hot, red or swollen, inform your doctor as soon as possible. You may need some antibiotics. Lymphoedema can be treated. Talk to your doctor if you notice any swelling, however slight. There is a lymphoedema clinic at University College London Hospital which runs on a Friday afternoon in the oncology outpatients department. There are also two Lymphoedema nurse specialists within the oncology department who can offer expert advice and practical instruction. Please ask the radiographers, nurses or doctors if you wish to see them. A small proportion of women after axillary surgery have radiotherapy to this area. The need for radiotherapy to this area after or instead of surgery, increases the chance of lymphoedema developing in later months or years. Approximately 20 per cent of these women will develop some degree of swelling. The swelling can occur at any time. Radiotherapy to the breast and axilla (armpit): As well as the side effects mentioned above, women who have radiotherapy to the breast and axilla may experience the following: Rarely, there is the risk of shoulder stiffness. This is due to scarring of the tissue around the shoulder joint, which may result in limitation of movement. Regular arm exercises will help. A very rare side effect which may occur is called Brachial Plexus Neuropathy. This is caused by damage to the nerves around the area treated and can lead to pain, weakness, altered sensations (such as numbness and pins and needles), and restricted movement to the arm and hand on the treated side. It occurs in approximately one in every 1000 women who have radiotherapy. If you are concerned please discuss this with your doctor.
14 14 Other possible side effects: Some women may have radiotherapy to the lymph nodes in the neck. If so, there is a very small risk that you may develop weakening of the collarbone on the treated side. This may increase the risk of a fracture in later years. If radiotherapy is given to the left breast, a small portion of the heart may be in the treatment field. This may lead to an increased risk of heart (cardiac) problems in later years. Your doctor will discuss this fully with you if it is a significant risk for you. Specialist breast care nurses You may have already met a specialist breast care nurse at the hospital where you had your surgery. There are breast care nurses at University College London Hospital, and you are welcome to see them during your radiotherapy treatment. If you would like to see them to discuss any worries or ask any questions about your disease or treatment, ask the radiographers or nurses to contact them. Arm exercises If you were shown arm exercises after your surgery it is important that you continue to carry them out during radiotherapy. You should continue with the exercises for a few months after radiotherapy finishes. The exercises help to regain shoulder movement and help to prevent joint stiffening. If you have not been shown how to do the exercises or are having difficulty with moving your arm, the radiographers or nurses can advise you or refer you to the breast care nurses. Gentle swimming is also a good form of exercise. However, please ask your doctor if swimming is appropriate for you. If you are able to swim you should shower well afterwards using a non-perfumed soap to rinse away the chlorine as this can dry the skin. Gently pat the skin dry and apply a layer of aqueous cream.
15 15 Breast prostheses If you have had a mastectomy you will have been given a temporary soft prosthesis after your operation (also known as a cumfee). You can continue to wear the cumfee during your treatment, however you may find wearing a bra uncomfortable. If possible avoid wearing a bra when you are at home to prevent friction in the treatment area, which will help reduce the skin reaction. You may have been given a silicone breast prosthesis. It is advisable not to wear this during the treatment as it may cause skin irritation. If you have not been fitted with a silicone prosthesis this can be done at the hospital where you had your surgery, when radiotherapy has finished. It is advisable to wait for one month so any skin reaction has settled down. Advice on prostheses and bras can be obtained from your own breast care nurse or surgical appliance office at your hospital. Alternatively the breast care nurses here can advise you on this aspect of your post-operative care. As with any kind of treatment, there is a risk of side effects from radiotherapy. There are considerable variations between individuals in the severity of the side effects and which side effects occur. There are side effects which occur during treatment (acute) and more longterm side effects which can occur many months or years after treatment. We feel it is better if you are kept informed of all the possibilities.
16 16 Support This booklet 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 and support from your specialist nurse, the Macmillan information and support radiographer, the treatment radiographers and the radiotherapy nurses. 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. All the staff are here to make sure your treatment goes as smoothly as possible and to support you through this difficult period. We will try to help you with any questions or problems you may have. After your radiotherapy has finished Once your radiotherapy treatment has finished you will be given a follow-up appointment to see your doctor in about fourweeks time, either at University College London Hospital or your referring hospital. The side effects you may have experienced will continue after radiotherapy treatment has finished. It is common to experience a worsening of the skin reactions for about 10 to 14 days after radiotherapy. Please feel free to contact the department, your specialist nurse, the nursing staff or the Macmillan information radiographer if you are worried. You could also contact your GP or call outpatients to request an earlier follow-up appointment. However, most of the side effects should resolve after you have finished treatment. Before you finish your course of treatment please ask for a copy of the leaflet Finishing treatment.
17 17 Useful contact numbers Local Radiotherapy Care Team Direct telephone: Main switchboard: ext bleep 2222, 5825 or 2075 Alternative switchboard: ext 73729/bleep 2222, 5825 or 2075 Macmillan Information and Support Radiographer Mark Williams Direct telephone: Main switchboard: ext 73711/bleep 1458 Alternative switchboard: ext 73711/bleep Surgical Breast Care Specialist Nurse: Direct telephone: Main switchboard: bleep 1523 Alternative switchboard: bleep 1523 UCLH Lymphoedema Clinic Secretary: Direct telephone: Lymphoedema Nurse Specialist: Main switchboard: ext 4324 Alternative switchboard: ext 4324
18 18 National Breast Cancer Care: Freephone: Textphone: Cancerkin (Breast cancer self-help and support service for patients and relatives) Telephone: Monday to Friday, 09:00 to 17:00 Breast Cancer Haven (An information and support service for anyone affected by breast cancer) Helpline Nurse: Monday to Friday, 09:00 to 17:00 Information Nurse: Lymphoedema Support Network Provides information and support for people with lymphoedema Support Line: Cancer Help UK Freephone Helpline: Monday to Friday, 09:00 to 17:00 Patient UK Comprehensive, free, up-to-date health information
19 19 Macmillan Cancer Support Cancer Line freephone: Monday to Friday, 09:00 to 21:00 Textphone: Monday to Friday, 09:00 to 18:00 Cancer Research UK Carers UK Freephone: Wednesday to Thursday 10:00 to 12:00 and 14:00 to 16: Cancer Black Care Telephone: DIPEX A database of individual patient experiences National Library for Health Covers all aspects of health, illness and treatments NHS Direct Telephone: Available 24 hours
20 First published: June 2005 Last review date: June 2013 Next review date: June 2015 Leaflet code: UCLH/S&C/CD/RT/BREAST/2 University College London Hospitals NHS Foundation Trust Created by Medical Illustration RNTNEH Unique Code: 28863
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