Radiotherapy for gynaecological cancers

Radiation used in medical treatment is given in controlled, carefully measured doses. The aim is to include all tissues that could possibly contain cancer cells while minimising the dose to the normal tissue.

No. Patients treated by X-rays do not become radioactive. The radiation does not stay in your body after treatment, so you cannot do anyone else any harm. It is safe for you to mix with other people including children and pregnant women and to have visitors if you are on the wards, apart from when you are actually having brachytherapy (internal) treatment.

Not usually. The treatment may make you feel more tired than normal. Please tell your treatment team about any existing medical conditions and continue with any medication you may be taking. Ask your Christie doctor if you are worried about any other health problems.

If you are having treatment as an outpatient, the radiographers will give you an appointment time for the first treatment when you attend for your planning session. After that, you can arrange with your treating team the time that suits you and the machine.

Please try and be as flexible as possible and give priority to your treatment sessions over other general appointments. The time you prefer may not be available at the start of your treatment because of the large numbers of patients on the unit.

If you need a specific time, please give the radiographers at least 48 hours’ notice. The time we give you may vary half an hour either way each day due to emergencies. You may be given your appointment times for the whole of your treatment on your first visit or alternatively appointment times will be given on each visit for the following day.

Once a week, you will meet your consultant or one of their team. You often don’t need a booked appointment but will be told where to wait in radiotherapy. If you are having chemotherapy, you will usually have a pre-booked appointment in the chemotherapy clinic.

If you are coming by ambulance transport, we will give you a morning or afternoon appointment to fit in with your consultant’s clinic.

If you are an inpatient, the treating suite will send a porter for you when they have a free slot and you will be seen regularly on the ward by your medical team.

You will usually have your treatment as an outpatient. Some people continue to work during part of their treatment.

However, after daily travel and treatment, you may feel tired and need to rest.

Your doctor or advanced practitioner will have discussed with you about travelling daily for your treatment as an outpatient. However, if you do become unwell during your treatment we will usually admit you as an inpatient to support you through your radiotherapy. You will not have to stay in bed, so bring suitable day wear, so that you can get dressed if you feel well enough.

Many patients can bring themselves or can ask a friend or relative to help them out. If you think you may need ambulance transport, please discuss this with a radiotherapy support worker or radiographer on your first visit to the radiotherapy department.

Ambulance transport can be arranged subject to eligibility criteria based on medical need. There also needs to be a medical need for you to bring an escort on hospital transport. There can be delays for some time either side of your appointment because of the high demand for transport. Please take this into account when you are deciding whether to use ambulance transport or not.

Hospital transport is provided by an external provider and you need to be ready 2 hours prior to your appointment time. You can contact the transport liaison office at The Christie directly on 0161 446 8114 or 8143 for advice.

Side effects of external and internal treatment

Acute side effects are temporary and they do not happen to all patients. They generally develop during the second half of the course of treatment usually after 7 to 14 days, and last for 4 to 6 weeks after the treatment ends. The time taken to recover does vary from patient to patient. If you have any questions about side effects, please ask any member of the team treating you.

Bowel

Pelvic radiotherapy can cause damage to the gut which affects its normal function. This may mean difficulty digesting and absorbing, or becoming more sensitive to some foods. It is important that you continue to eat nourishing food during and after treatment. Ask the nursing or radiotherapy staff for a copy of The Christie booklet ‘Eating – help yourself’. It can also be obtained from the cancer information centre or The Christie website. If you are struggling with the side-effects of treatment, it is important that you let your team know.

It is important that you remain hydrated. This will help  to keep your stools soft and encourage movement if you are constipated, and will replace fluids lost if experiencing diarrhoea. Examples can be found in the ‘Eating – help yourself’ booklet.

There is little scientific evidence about the best diet to follow to manage your symptoms. Food exclusions often lead to an unnecessary restrictive diet and cause anxiety over the foods we eat, unexpected weight loss and nutritional deficiencies.

Dietary advice may be given to you by your team, this should be tailored to you based on your treatment, symptoms and test results. For example, it can be quite common to have too much bowel gas or ‘wind’, this can interfere with the radiotherapy treatment plan so some patients will be given special instructions and a dietary sheet ‘Dietary advice: reducing bowel gas before and during radiotherapy’. This is usually only meant to be followed for a short time during treatment and you should try to return to your normal diet as soon as you are able.

If you are not managing to eat a balanced diet, a daily over the counter complete multivitamin and mineral supplement is advised. This can be purchased from the supermarket or pharmacy.

Many patients develop diarrhoea during treatment, and are prescribed medication such as Fybogel which acts as a bowel regulator, it is a powder which needs to be mixed with water or a fizzy drink and then drunk immediately. If your bowel problems persist, then you may need additional medication such as loperamide (Imodium®) or codeine phosphate which can be prescribed for you.

The bowel symptoms vary greatly between patients. Most patients start to see some improvement 2 to 3 weeks after treatment has finished. Some patients are virtually back to normal within 6 weeks, for others they remain unsettled for several months and for some they never return to what was normal for them.

Bladder

In a small number of cases, radiotherapy can irritate the bladder and give symptoms similar to cystitis such as increased frequency and burning or difficulty when passing urine. We recommend that you take plenty of fluids, at least a litre a day preferably 2 to 3 litres. It is best to avoid drinking lots of tea and coffee and avoid all alcohol. Some people find a glass of cranberry juice a day helpful.

Following brachytherapy, if you get symptoms of cystitis such as burning, stinging, going more frequently or smelly urine, then you should see your GP. You may need antibiotics as there is a small risk of getting an infection when you have had a catheter. Bladder and bowel problems gradually get better, and most people are back to normal at their follow-up clinic visit 6 weeks after treatment.

Fatigue

You may feel tired during treatment so rest is important, although a small amount of exercise each day has been found to be beneficial in reducing fatigue. This is explained further  in The Christie patient information booklet ‘Be active, stay active’ which is available from the cancer information centre. Tiredness often affects people after treatment ends, so you may need help with housework and shopping. Some patients also have aching and stiffness in their joints and muscles. As your strength returns, as it will do, you can gradually take up your normal daily activities.

Radiotherapy treatment can be a demanding treatment. If you are feeling low or are not coping, let the nurses, doctors or radiographers treating you know so they can discuss with you what might help.

Vaginal changes

If your radiotherapy includes the vagina then you may be at risk of vaginal stenosis (shrinking, narrowing, shortening) caused by scar tissue forming in the vagina following treatment. This is more common if you are having brachytherapy (internal radiotherapy) as well as pelvic radiotherapy. If you are at risk of this, it will be discussed at the start of your treatment.

You will be given extra guidance and support about dilating the vagina, which helps to keep the vagina open and normal. This is a very personal area of care, and some patients will choose not to do this. However, this can lead to the vagina becoming shorter and narrower, making it more difficult in the future to have vaginal examinations or resume sexual intercourse.

Your vagina can be kept open by vaginal dilation. Dilation means ‘stretching and opening’ and can be done by:

1. Use of a dilator
2. Sexual intercourse
3. A combination of intercourse and dilator use

At your SWAN appointment we will give you a vaginal dilator and some lubricating gel and we will explain to you how to use it. Lubricants such as ‘Sylk’ and ‘YES WB’ can be prescribed or purchased from a pharmacy.

Obviously this is a personal area of care and some people have reservations or strong feelings about using a dilator. Please feel free to discuss any aspect of this with a member of your medical team or at your SWAN appointment. Your feelings will always be respected.

How to use your dilator

Start using your dilator 4 weeks after finishing your treatment, and continue to use it once a day, every day, for 6 weeks. We would then advise you to continue the use of the dilator 2 to 3 times a week.

Examine the dilator before each use to be sure that it is smooth. If there are cracks or rough edges, do not use it – phone the ward staff or specialist nurse for a replacement. You should not feel any pain or discomfort if you are gentle and stay relaxed while using the dilator.

Starting with the smallest size dilator, attach the size 1 (smallest) to the size 2 cone and apply some gel to the dilator and to the entrance of the vagina. Lie on your back in bed with your knees bent and slightly apart. Some people prefer to insert the dilator standing with 1 leg raised on a chair, or squatting (you may find it is easier in the bath, or after a bath, when you are relaxed).

Insert the dilator into your vagina gently and as deeply as you can without discomfort but you should be able to feel it gently bounce off the top of the vagina when it reaches the end. Then gently move the dilator from side to side, up and down and then circular movements. Also gently stretch the vagina upwards by gently pushing it upwards and letting the dilator bounce off the top of the vagina, this helps to keep the elasticity of this area which is particularly important if you are going to have intercourse in the future. Continue this for 5 minutes. Now take it out and clean it with hot soapy water, rinsing it well. If you are able to do this easily, then next time try using the next size dilator and progress up the sizes.

Do not be alarmed if slight bleeding or spotting occurs following dilator use. This is a normal reaction. Do not use force inserting the dilator. If you are unable to insert it easily, postpone it for a few days then contact your specialist nurse. Most patients should be able to progress to the second size dilator within a few days. If, after 1 to 2 weeks, this is easy and comfortable to use, then progress to the third and fourth size dilator. Remember, it is important to use a dilator of the right size that reaches the top of your vagina (you should be able to gauge this yourself) and that you use the dilator regularly.

After your 6 week check-up, even if you are not going to have intercourse or you are having it infrequently, we still recommend you continue to use the dilator daily for another 4 weeks and then 2 to 3 times a week for the next 2 to 3 years. You can talk to a member of the nursing/medical team at any point.

Sexual relations

It is important in close relationships to continue to have intimacy but we suggest that you avoid intercourse during radiotherapy. The top of your vagina can become inflamed and you may find intercourse uncomfortable. Also, if you have a cervical cancer, then intercourse can lead to increased bleeding. We, therefore, recommend that you do not have intercourse while you are having radiotherapy and for a short time afterwards to allow the area to heal.

However, a course of radiotherapy is the equivalent of a major operation, and it may be some months before you feel interested in the physical aspect of your relationship and your vagina is fully healed and comfortable. Many patients find that their vagina is a little dry, and at first it may help to use a vaginal moisturiser for day-to-day dryness and lubricant during intercourse or while using a dilator. Your doctor or nurse can recommend a good quality lubricant, such as ‘Sylk’ or ‘YES WB’.

If these problems last for months after treatment, please discuss this with your doctor at the follow-up visits as we would like to help you get back to your normal lifestyle. Sex is not harmful to you and will not make the cancer return.

Nausea

Some people may feel sick during their radiotherapy treatments, your taste changes or you go off your food. This is more likely to happen if you are having chemotherapy. Let the nurses or doctors looking after you know because they can suggest things that may help.

Skin/pubic hair

Most radiotherapy treatments to the pelvis do not cause  sore skin. We will advise you at the start of treatment if your treatment is likely to do so, and what you can do to help yourself. Some patients do find that their pubic hair falls out during or shortly after treatment, this usually grows back but is often thinner.

Vaginal discharge or bleeding

You may find that you have a vaginal discharge. If you have had internal treatment you may have light bleeding. These are not unusual and may continue for a time after you get home. It is not likely, but if the discharge or bleeding alters in any way (for example, becomes heavier or smells unpleasant or if there is bright red heavy bleeding), phone The Christie Hotline on 0161 446 3658 (24 hours a day, 7 days a week) for advice.

Why do side effects happen?

The side effects happen because, as well as destroying cancer cells, radiotherapy can also damage healthy cells nearby. As the diagrams on page 6 show, the bladder and bowel are very close to the cervix and womb (uterus), so they can be affected by the radiotherapy too. When planning a patient’s treatment, the doctors choose the dose that will give the best chance of destroying the cancer cells and reducing the symptoms – with the smallest possible effect on healthy tissue.

It seems that some people are more sensitive to radiation than others, and are more likely to experience side effects.  At present, it is not possible to identify these people before treatment starts. Also, in some patients the tumour itself can cause damage to the surrounding tissue and structures.

There are some late side effects of radiotherapy that your doctor will discuss with you. These may occur months or years after your treatment and happen only in a very few cases. They can include long-lasting bowel, vaginal, bone and bladder problems.

Cancers can damage the tissues that they are growing in. Cancer of the cervix can grow towards the bowel, and/ or bladder and/or vagina and can weaken them before treatment. If the cancer is fully destroyed by the radiation, the tumour damage to the bladder, bowel and vagina may mean that it is impossible for this damage to be repaired, even after successful treatment. The extent to which this happens varies enormously, and depends on the size and extent of the tumour and its nature.

The following sections give a summary of the possible late effects of pelvic radiotherapy. If you would like more detailed information, please visit the Macmillan Cancer Support website www.macmilan.org.uk and search for ‘late side effects of pelvic radiotherapy’.

There is also further information available at the Pelvic Radiation Disease Association website www.prda.org.uk

Your doctor will ask you to sign a consent form before treatment to say that you agree to the treatment and understand about the possible long-term effects.

Bladder, bowel and vagina

At least half of patients treated may develop bladder, bowel or vaginal problems, but for most these effects will be mild and manageable. These can include some lasting alteration in bowel habit which can be controlled by altering diet, or needing to empty the bladder more frequently.

If your bowel symptoms persist for more than a year after treatment or they settle and then return (even years later) then please let your oncology team know about it. They may suggest a referral to a gastroenterologist who specialises in the effects of pelvic radiotherapy (pelvic radiation disease).

In a minority of patients (3 to 10 in 100) long-term effects can be more serious and include such effects as narrowing of the bowel or bleeding from the bladder. If this happens, each woman is assessed and referred to a specialist who has experience of dealing with these problems. Some patients may need to have surgery to correct these problems (5 to 8 in 100). The risk of these serious effects for each patient is influenced by the combination of cancer treatment, size and stage of the cancer and pre-existing problems in the pelvic area. These figures are based on treatment outcomes from patients treated at The Christie.

Lymphoedema

This is swelling of the leg(s) and/or the pelvic region which occurs in a small number of patients after gynaecological cancer. When it does occur it is usually in women who have had both surgery and radiotherapy, or where the tumour has spread to the lymph nodes. These treatments can disrupt the workings of the lymphatic system especially nearby lymph nodes. Your treating team will discuss with you if this is something you are particularly at risk from.

It is difficult to predict who will go on to develop lymphoedema, although there are certain precautions which you can take which will reduce your chance of developing it:

• Look after your skin on the legs and/or pelvic Keep it clean and well-moisturised and protect from any break in the skin that can be caused from cuts, grazes, insect bites or sunburn.
• Try to exercise and keep active. Once you have recovered from treatment, you can usually get back to your normal activities and exercise
• Try and keep to a healthy Being overweight can increase your risk of developing lymphoedema.
• If you see any signs of infection (redness, heat, swelling) in the skin of the of the legs or genital area then contact your GP immediately as you may need to be treated promptly with

The Macmillan booklet ‘Understanding Lymphoedema’ is available on their website www.macmillan.org.uk and contains a lot more information and useful advice. Alternatively, ask your specialist nurse for advice or written information. If you notice any signs of developing lymphoedema such as swelling, please contact your treating team or your local specialist nurse who will then give you further advice and offer to refer you on to the local Lymphoedema Service.

Bone changes

Pelvic radiotherapy can sometimes cause weakness in the pelvic bones. Also, the lack of the oestrogen hormone following the menopause can make bones weaker and more at risk of osteoporosis (bone thinning). This can lead to very fine, hair-like cracks in the bone which are called insufficiency fractures and can develop months or years after treatment.

In some patients this can lead to discomfort and pain in the pelvic area which can make moving and walking difficult.

Insufficiency fractures can often be diagnosed from an MRI scan which your hospital doctor can organise. The bone changes and pain when they do occur can often be helped by medication, dietary advice and exercise.

Many factors influence bone health but an early menopause (before 45 years) can increase the risk of developing osteoporosis. This means that there is a greater risk of fracturing a bone later in life. To assess bone density a dual energy X-ray absorptiometry (DEXA) scan is used, this can normally be arranged by your GP.

More information about bone health and osteoporosis can be obtained from the Royal Osteoporosis Society by visiting www.theros.org.uk or calling their helpline on 0808 800 0035 or email nurses@theros.org.uk

Infertility and early menopause

The treatment causes infertility which is permanent and will result in an early menopause.

In younger women who are still having periods, radiotherapy to the pelvis causes the ovaries to stop working because they are very sensitive to radiation. This means unfortunately that you will no longer be able to have children and will have an early menopause. If infertility is a concern for you and your partner please let the doctor who is planning your treatment know so that this can be discussed further with you and then if appropriate they can arrange for you to see a fertility specialist urgently.

Some patients find that their periods stop while having radiotherapy. Others can have 2 or 3 periods following treatment before these stop altogether. At the same time, you may start to have menopausal symptoms such as hot flushes, night sweats, vaginal dryness, irritability and mood swings.

Treatment and management of the menopause needs to be worked out individually for each woman because it depends on many factors including type of cancer, past medical history, age and so on. This needs to be discussed on an individual basis. If you would like more information about this, please ask the team treating you. The following websites also have further information:

• Rock My Menopause www.rockmymenopause.com
• Menopause Matters www.menopausematters.co.uk For accurate, up to date information about menopause and treatment options.
• Daisy Network for younger women www.daisynetwork.org