NETWORK. Pelvic radiotherapy treatment NORTH LONDON GYNAECOLOGICAL CANCER THE. Patient Information Series No. G7 ORTH ONDON ANCER ETWORK

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1 NORTH LONDON GYNAECOLOGICAL CANCER NETWORK Pelvic radiotherapy treatment Patient Information Series No. G7 THE N L C N ORTH ONDON ANCER ETWORK

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3 Introduction This booklet provides information for women who are due to have pelvic radiotherapy for gynaecological cancers. It explains what radiotherapy is and how your treatment is planned and delivered. The booklet also explains the side effects you may experience during and after treatment, and how best to cope with them. We hope this information will answer many of your questions. If there is anything that is unclear, or you still have questions, please speak to a member of the Oncology staff.

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5 Contents Radiotherapy to the pelvis...5 What is external beam radiotherapy?...5 Planning your treatment...6 External beam radiotherapy treatment...7 Radiotherapy and chemotherapy...7 What is internal radiotherapy (brachytherapy)?...8 Side effects during treatment...10 Late side effects of radiotherapy...15 Pelvic care...16 Menopausal symptoms as a result of pelvic radiotherapy...18 Sexuality...19 Support...21 After your radiotherapy has finished...21 Useful contact numbers at University College London Hospitals... inside back cover

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7 Radiotherapy to the pelvis A woman s reproductive system consists of two ovaries, two fallopian tubes, the vagina and the uterus (womb). All of these organs lie close to the bladder and bowel. Most gynaecological tumours arise in the cervix or endometrium (uterus lining). Radiotherapy is the use of radiation to treat cancer and is a very common form of treatment for gynaecological cancers. It is often used in combination with surgery and chemotherapy. Your oncologist (specialist cancer doctor) will discuss the best treatment plan for you and your particular type of cancer. Radiotherapy may be given given in different ways: externally, internally or a combination of both. What is external beam radiotherapy? External beam radiotherapy is treatment using high energy X- rays given by large machines called linear accelerators. Usually, several beams of radiation are carefully and accurately directed to a specific area of the body. It is a quick and painless procedure. You will not become radioactive and it will be safe for you to be with family and friends. Treatment is usually given as an outpatient. An average course lasts for five weeks, attending Monday to Friday with weekends off. Each session takes about 15 minutes. Your radiotherapy doctor will tell you how many treatments you will be having. No treatment is completely risk free. Together, you and your doctor will consider the risks and benefits of the different treatment options and decide how to proceed. 5

8 Planning your treatment Before beginning radiotherapy, your treatment must be carefully planned. To plan your radiotherapy treatment we carry out a radiotherapy planning CT (computerised tomography) scan of your pelvis. This scan locates the exact site of the area to be treated in relation to surrounding normal tissues. Before your scan, you will be required to have a comfortably full bladder. You will be asked to drink several cups of water when you arrive in the department. Water is available in the waiting room. About 20 minutes after you have had some water, you will be taken for the scan. You will be positioned on the scanner couch, lying on your back with supports under your head, knees and ankles, with your arms across your chest. The radiographers will ensure your body is straight. They will then place some temporary marks on your skin using felt-tip pens. These are for reference only and can be removed when you go home. The scan of your pelvis will take about five minutes; during this time, you can breathe normally. Once the scan is complete, the radiographers will mark three or more specific points on your pelvis. These are the co-ordinates for the treatment and to ensure treatment accuracy on a daily basis. The points are permanent and are done by placing ink on the skin and then gently scratching the surface of the skin with a fine needle. You will be free to leave and before you go you will be given an appointment card with the date and time for your next visit (for radiotherapy treatment). 6

9 External beam radiotherapy treatment Before each treatment we ask that you have a comfortably full bladder, to reduce the dose to the small bowel by pushing it away from the treatment area. You will need to drink several cups of water (available in the waiting room) before you are called for treatment. During treatment, you will be asked to lie on your back on a special hard treatment couch. The radiographers will ensure you are in the correct treatment position by aligning the permanent marks on your pelvis using special laser lights. Please try to relax as much as possible for your own comfort. The lights in the treatment room will be dimmed whilst the radiographers move the treatment machine and couch into position using your personal treatment plan. When final checks have been made, the radiographers will leave the room to switch the machine on. You will not feel not feel anything from the treatment and it is okay to breathe normally throughout. However it is extremely important that you remain very still throughout the whole procedure. The radiographers will be outside the treatment room watching you on a closed circuit television at all times. Each treatment session lasts about 15 minutes. It is quite normal to feel anxious on your first day of treatment, but as you get to know the staff and the daily routine, it should become easier. Please talk to us if you have any worries. Radiotherapy and chemotherapy Some patients will be given drug treatment (chemotherapy) during their radiotherapy. This is usually given once a week for five weeks. The chemotherapy increases the activity of the radiotherapy against cancer cells. Your doctor will tell you which chemotherapy you will be having. Patients receiving 7

10 chemotherapy in addition to radiotherapy may experience more severe or additional side effects to those listed here, depending on the drug regimen used. The use of chemotherapy may increase the likelihood of nausea (feeling sick) with your treatment. It may also cause small ulcers in the mouth and contribute to some of the diarrhoea seen with radiotherapy. Your doctor will discuss these issues with you. Please let us know if you have these side-effects as we may be able to give you some medicine to control them. 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 further questions please speak to a member of staff. What is internal radiotherapy (brachytherapy)? If you have received external radiotherapy to your pelvis, your doctors may advise you to have internal radiotherapy (brachytherapy) to complete your treatment. Internal radiotherapy or brachytherapy is a form of high dose radiotherapy given at a short distance. Radioactive sources are placed directly inside the female organs via tubes. A computer-controlled machine called a Microselectron pushes a single radioactive iridium wire into the tubes. Because the computer can control how long this wire remains in each of the tubes, the doctors are able to control the radiation dose. This procedure will be carried out as an inpatient or as an outpatient, depending on your specific treatment requirements. Some patients may require an anaesthetic to prevent discomfort during treatment. 8

11 Inpatient treatments Inpatient treatments require you to come in for a two-night stay into a radiotherapy bed at University College Hospital. The procedure will take place in the early afternoon. You will need to be without food or drink for six hours before this treatment (a light breakfast at 6.30 am is allowed). You will be visited by the anaesthetist in the ward who will explain the anaesthetic procedure. An anaesthetic ensures you will be not be able to feel anything. Outpatient treatments This requires you to come to the Radiotherapy Department on the day of treatment in the morning. You will be able to eat or drink normally before the procedure. You will need to empty your bladder before the treatment starts. This internal treatment may be carried out after external radiotherapy to your pelvis. Usually, one or two treatments are given a week apart. Treatment The treatment takes place in a special theatre in the Radiotherapy Department. An applicator will be positioned into your uterus or vagina. The applicator will be connected to the Microselectron unit and the treatment will be given. You will be alone while the treatment is given just as you are during radiotherapy. You will be watched on closed-circuit television. The treatment will take between 10 and 15 minutes. After this time, the doctor will take out the applicators and you will be sent back to the ward to recover or allowed home if you are an outpatient. After the procedure, there is often some slight vaginal bleeding This should clear up after 48 hours in most cases. The treatment is often repeated one week later. 9

12 Side effects during treatment Both internal and external radiotherapy may cause changes to normal tissues. Most side effects occur during treatment and settle soon afterwards. However, some may not develop until some months or even years afterwards. The risk and severity of side effects will vary from person to person and depend on many factors, such as which part of the pelvis is being treated and the dose of radiotherapy given. Your radiotherapy doctor will discuss risks fully with you before you sign your consent form. However, there will still be plenty of opportunity for 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 treated area may become pink and dry. You may notice the skin between the legs and around the back passage becoming red, sore and moist towards the end of treatment. Some people develop an irritation of the skin, or itch, around the back passage (anus) or the vulva. If you have piles (haemorrhoids) or have had these treated in the past, they may get worse during treatment. Please inform a member of staff as your doctor can prescribe medication to help. If you have an operation after your radiotherapy, the treatment may slow down the healing of any surgical wound in the treatment area. However, it should heal fully with time. During treatment we recommend that you wash this area by means of a shower or a gentle hand wash, using a non-perfumed soap. It is not advisable to sit and soak in a hot bath. When drying your pelvis avoid rubbing with a towel, but gently press the towel around the pelvic area. If the skin between your legs becomes sore, it may be advisable 10

13 to wear silk underwear or loose cotton boxer shorts. Aqueous cream may be applied to the treated skin. This is a simple, unperfumed moisturising cream which you will be given at the start of treatment. This cream can be used from the start of treatment. It helps prevent the skin from becoming too dry. Smooth a little cream very gently on to the treatment area two to three times per day. Do not rub it in. If the skin in the treatment area becomes too tender 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 our leaflet on General Skin Care. Do not use any other talcs, creams or lotions in the area being treated unless advised by a member of staff. Bowel changes: your bowels will become loose as you progress through treatment. It is likely that you will develop diarrhoea after three to four weeks of treatment. This may be accompanied by colicky or wind pains. These are normal reactions to the radiotherapy. We advise that you continue to eat a normal diet and try and drink plenty of fluids (between one and two litres a day). You will be given advice by the medical staff about antidiarrhoeal medication. If the diarrhoea becomes severe, please inform a member of staff as soon as possible as dietary advice can be given, and further medication may be prescribed. Please ask for our leaflet on Coping with Constipation or Diarrhoea. Very occasionally, you may notice a discharge of blood and mucus (slime) in your stools. Inform the radiographers or nurses if you experience such a problem as medication can be given. You may develop the urge to open your bowels more often. Due to the radiotherapy, the rectum becomes inflamed and you may feel the urge to go to the toilet more (whether or not you actually need to pass a bowel movement). 11

14 Diet recommendations to prevent diarrhoea Foods low in Fibre Protein foods: Tender meats (baked or poached), eaten with fat trimmed Poultry with skin removed Fish Eggs Vegetables: Carrots/parsnips/swede Potatoes without skin Tomato paste and puree Vegetable juices Fruits and juices: Bananas Pealed apples/pears Canned pineapple Strained cranberry sauce Fruit juices and nectars without pulp (apples, grapes, cranberry) Bread, cereal, grains: White bread, rolls, bagels, English muffins Cornflakes Puffed rice Rice Crispies White rice Spaghetti, noodles Foods to avoid: Green vegetables Fruit such as berries, grapes, prunes Spicy foods Brown bread All Bran, porridge, Wheatabix 12

15 Bladder: you may find that you have to pass urine more often both day and night. You may also experience a burning sensation when you do pass urine. This is called radiation cystitis and is caused by the radiotherapy irritating your bladder. If you experience a burning sensation, please inform the radiographers or nurses, as they will get you to produce a urine sample (MSU) to check that it is radiation cystitis and not an infection. It may help if you drink plenty of fluids. Drinks such as cranberry juice have been found to help, whilst drinks such as tea and coffee can make the bladder worse. Experiment for yourself and see what works for you. If you are having bladder or bowel problems please ask to speak to our Continence Advisor. 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 tired. Please ask for our leaflet Coping with Fatigue and Tiredness. Nausea: some patients, particularly those who are receiving chemotherapy, may feel sick and sometimes be sick. Please inform the radiographers if this happens. The doctor can prescribe anti-sickness tablets to alleviate any symptoms. Please ask for our leaflet Coping with Nausea. Appetite: it is important that you try to eat a 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. Some patients experience a loss of appetite. This may be due to a number of factors, such as anxiety about unfamiliar surroundings or side effects of radiation 13

16 or chemotherapy treatment. You will be weighed weekly by the radiographers and if there is a significant weight loss you will be referred to the dietitian. Please ask for the leaflet Eating Hints for Patients. Hair loss: there will be a loss of hair in the treated area only. This is usually temporary and hair should start to grow back eight to 12 weeks after radiotherapy has finished. Genitals: during treatment, the vagina and vulva are likely to become sore. You can, if you wish, have intercourse during treatment or resume intercourse (when you are ready) after treatment. However, sexual intercourse could increase the soreness. If appropriate you will need to take adequate contraceptive precautions. The doctors or your specialist nurse will discuss this with you. Radiotherapy will reduce the amount of natural lubrication produced by the vagina. Therefore sexual intercourse may be a little uncomfortable. If the vagina feels dry during intercourse, a lubricant such as KY Jelly or Replens may be useful during this period. There may be some spotting of blood initially after intercourse this is normal but do mention it to your doctor or nurse specialist when you see them. Besides these physical changes, having cancer and undergoing treatment can cause you to feel physically and emotionally tired. All of these concerns may mean that you lose interest in your sexual relationships. A full recovery from the physical and emotional aspects of your treatment normally happens over the months following treatment. There are female gynaecological nurse specialists and clinical psychologists available to discuss any concerns that you may have. Please ask a member of staff to refer you. 14

17 Late side effects of radiotherapy Late side effects incurred during treatment can appear to develop 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 not be able to tell you before you are treated whether any of the long-term side effects will happen to you. The effects may include: Bowel changes: about 20% of women notice permanent changes in their bowel habits. This is often looser or more frequent motions than they were before treatment. Sometimes medication may be needed to regulate your bowel on a longer-term basis. Very rarely, scar tissue may develop that can affect the bowel and add to the problems of diarrhoea. Very occasionally, after surgery and radiotherapy the tissue surrounding the bowel can stick together (adhesions) causing a blockage. This can sometimes require further surgery to correct. This is a very rare problem, but please do speak to your doctor if you are worried. Bleeding: about a year after the treatment is complete, small blood vessels can occasionally form within the rectum and bladder. These vessels are more delicate than normal and can break down, producing minor bleeding in the bowel motion or urine. This is not usually serious. However, if you notice any bleeding it is important to let your GP, specialist nurse or specialist doctor know as they may wish to arrange further tests. Passing urine: very rarely, scar tissue may develop in the wall of the bladder which can cause shrinkage of the bladder. Some patients find that they have to pass urine more frequently than before radiotherapy. Some patients may find it difficult to hold on, requiring them to get to a toilet urgently. If you are worried about this please discuss it with your doctor. They may be able to refer you to a continence advisor at the hospital or in the community. 15

18 Second malignancy: the use of radiotherapy carries a small risk of causing a new, different, cancer in the treated area. This is something that may happen many years later, but it is a very small risk for most patients. If you have any concerns about this, please discuss it with your medical team. Sexual function: women who are still having periods before radiotherapy will go through the menopause (the change ), due to the effects of the radiotherapy on the ovaries. As a result of this you will become infertile. As mentioned earlier, some women may initially notice vaginal dryness. If this continues to be a problem you should discuss this with your doctor or specialist nurse, as help and advice is available. The radiotherapy can affect the muscles of the vagina. They can become stiff and not stretch as well as they previously would have, and so the vagina feels smaller and tighter. This may lead to discomfort during intercourse. A number of these side effects can be prevented with good personal hygiene and the introduction of pelvic care. Pelvic care The aim of pelvic care is to reduce the formation of scar tissue. This ensures that vaginal examinations are carried out more easily and that a sexual relationship can continue without discomfort. The use of a vaginal dilator can help keep the vagina open (dilated), to prevent the formation of scar tissue in the vagina. If you have continued to be sexually active throughout and after your treatment (at least twice a week), you may not need to use a dilator. The dilator is a smooth plastic tube that will be given to you at the end of your radiotherapy treatment. It is recommended that you begin dilating within four weeks of completing your treatment. Sometimes there are reasons for delaying the use of the dilator. You will be told by the nurse or doctor if this is so. 16

19 It is recommended that you use your dilator three times a week for about five to ten minutes. Advice on how to use it will be given to you by your nurse In certain cultures this practice may not be considered acceptable. If you feel uncomfortable about this, further advice and help can be offered by your Specialist Nurse. The vaginal dilator: Using your dilator: Before inserting the dilator, try to relax (it is like inserting a tampon); then: Apply a small amount of a lubricant gel (e.g. KY Jelly ) to the end of the dilator. Lie on your back with your knees bent and slightly apart. You may find it easier to have one leg raised on a chair at the side of the bath. If this is unsuccessful, try the squatting technique (similar to inserting a tampon). The other alternative is to use the dilator whilst in the bath. Insert the dilator into the vagina as gently and as deeply as possible without causing any pain or discomfort. Do not force the dilator. If you are having any problems with pain on insertion, please inform your nurse. Move the dilator from side to side in a circular motion and then withdraw. Repeat this several times over five to ten minutes. If you notice slight bleeding or spotting, do not be alarmed, 17

20 as this is normal, due to the breakdown of scar tissue. If the bleeding is fresh and heavy, please contact your doctor or nurse. After use, withdraw the dilator and clean with warm, soapy water. Rinse and dry. Inserting your dilator: Menopausal symptoms as a result of pelvic radiotherapy Pelvic radiotherapy can often lead to an early menopause. This is different to a natural menopause, as there is a sudden change in hormone levels. The symptoms of the menopause may not occur immediately, but a few months after the completion of your treatment. An induced early menopause may lead to hot flushes, feeling low, tiredness, lack of energy, anxiety, irritability, night sweats, vaginal dryness and loss of libido. 18

21 There are a variety of treatments for menopausal symptoms, including hormone replacement therapy (HRT) and many complementary therapies. You can discuss the possibilities in greater detail with your nurse during your clinic appointment. There are many ways to help yourself relieve the symptoms of a menopause when experiencing hot flushes: Wear loose and natural fabrics next to the skin. Keep a diary of your hot flushes. You may see a pattern forming and then may be able to avoid situations that make the flushes worse. If hot flushes do occur, ensure that there are ways you can cool down, by keeping a mist spray or iced water nearby. Limit the foods and drinks that can trigger the flushes and night sweats. These include: sugary, salty or spicy dishes, alcohol, and caffeinated drinks (like coffee, tea and cola). Try to increase your intake of citrus fruits. Cut down on smoking if possible, or give up altogether, smoking can intensify the hot flushes. Taking regular exercise may help to reduce the intensity and frequency of the flushes, as the body adapts to coping with increased temperature. Try to relax. Deep-breathing exercises help you unwind, which can reduce stress and help to minimise the intensity of a flush. Sexuality Continuing to have an active sex life during and after pelvic radiotherapy can be difficult for both you and your partner. You may lose interest or have less confidence, or it may be that 19

22 other things are going on in your life which you feel are more important. Talk to your partner to help share your feelings and work through this time together. Your partner may be worried about hurting you, or that your cancer might be contagious. You can assure them that the cancer cannot be passed on through physical contact. You may also find it easier to try different sexual positions and activities that are more comfortable for you. Remember, if you do continue to have a sexual relationship throughout your treatment, your vagina may become increasingly sore. You might find it helpful to apply a water-soluble lubricant. The vagina will stretch to accommodate the dilator or a penis, but bleeding can occur after sex, even years later. This does not mean the cancer has returned, but it does need to be checked out. For most, bleeding will be from fragile superficial blood vessels within the vagina, which bleed with very little pressure. This can be treated and should not prevent you and your partner continuing a satisfying and fulfilling sex life. It will mean, however, you may need to wear external sanitary protection for 24 hours after sexual intercourse or using the dilator. Please don t be embarrassed to tell your Clinical Nurse Specialist, oncologist, gynaecologist or GP. We are here to help you and are experienced in dealing with these problems. There is a clinical psychologist available who sees many of our patients after treatment, helping them to cope with what has happened or is happening. Please ask to see them if you feel this would help you; the nurses will offer a referral when they see you at your post-radiotherapy appointment. 20

23 Support This booklet deals with the physical aspects of your treatment, but your emotional wellbeing is just as important. Having treatment can be distressing for some patients. Within the Radiotherapy Department there is support available from the Macmillan Information and Support Radiographer, the Radiotherapy Nurses and the Treatment Radiographers. However, if you require further medical or emotional support, you can be referred to a variety of health professionals specialising in different areas. 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 four weeks time. 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 days after radiotherapy. Please feel free to contact the department, your specialist nurse, the nursing staff or the Macmillan Information and Support 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. 21

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27 Useful contact numbers at University College London Hospitals NHS Foundation Trust Clinical Nurse Specialists, Gynaecological Oncology ext 8636 Monday Friday, 9.00am 5.00pm Team Co-ordinator ext 8636 or Bleep 2422 Monday Friday, 9.00am 5.00pm (answerphone available outside of these hours) T13 Ward (Gynaecology) ext or T14 Ward (Oncology) ext or Brachytherapy Superintendent Radiographer ext / Bleep 1128 / Bleep 2202 Macmillan Information and Support Radiographer ext / Bleep 1458

28 Support groups Cancer BACUP Macmillan Cancerline Jo s Trust (Fighting Cervical Cancer) Ovacome (Ovarian Cancer Support Network) VACO (Vulval Awareness Campaign Organisation) Amarant Trust Chai Cancer Care: This is a support service based in Hendon for Jewish patients and their families, offering a full range of support and alternative therapies. Cherry Lodge: This is a support service based off Barnet High Street. It offers appointments and drop-in sessions including aromatherapy, massage, and reflexology. There is also an ovarian cancer support group for people with cancer and for their families, friends, and carers. To book an appointment with Cherry Lodge contact the service, and on your first appointment a nurse will assess you to find out how they can support you best. Cancerlife: This is similar to Cherry Lodge and is based in Enfield. Helen Rollason Cancer Care Centre, North Middlesex Hospital This support service offers counselling, aromatherapy, reflexology and bach flower remedies. For more information contact: THE N L C N ORTH ONDON ANCER ETWORK