Series No.8 - Radiotherapy to the pelvis

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 during the course of your 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 can conceive a child (you have 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, please talk to your radiotherapy doctor, specialist nurse or specialist radiographer involved in your care.

1. You will see a clinical oncologist who will explain your diagnosis and discuss treatment options with you. You may also meet a specialist radiographer.
2. You will be consented for radiotherapy or proton beam therapy.
3. Radiotherapy/ Proton Beam Treatment planning appointment - you will have a planning a planning CT scan, using intravenous contrast dye if required. You may also have an MRI scan.
4. First treatment - you will start treatment 2-3 weeks after the planning scan. Each appointment will take approximately 30-60 minutes, depending on your treatment plan.
5. Review clinics - you will be reviewed once a week during treatment. This will either be face-to-face or via phone. You be reviewed by one of the following: your doctor, specialist radiographer or review team. All review clinics are in the radiotherapy or proton beam therapy departments and are timed with your treatment.
6. Treatment complete - you will be reviewed by your clinical team, as an outpatient, 4-6 weeks after your treatment course has completed. This may be a telephone consultation, or if face-to-face, will be held in the UCLH Macmillan Cancer Centre. Or Referred back to your local team for symptom care and follow-up.

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

Proton Beam Therapy appointments: All take place in the Proton Beam Therapy Department, floors B3 and B4, Grafton Way 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 7 weeks. Your treatment schedule will be decided by your doctor and confirmed on your first treatment visit to the radiotherapy or proton beam department.

Before beginning radiotherapy, your treatment must be carefully planned. Your first visit will be to the radiotherapy pre-treatment department. At this appointment you will have a CT scan, to gain 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. You will be asked to change into a hospital gown and remove all clothing from the waist down apart from your underwear.

The radiographers will place specialised pillows under your head and legs to support them and to ensure you are in the correct position. They will then place a modesty cover over your pelvic area and lower your underwear. Using a felt-tip pen, the radiographers will place some temporary marks on your skin and take some measurements. These are for reference only and can be removed when you go home. The radiographers will then leave the room to perform the CT scan.

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 be watching you the entire time. When the scan is done, and the radiographers have checked the images they will re-enter the room.

The radiographers will then mark three points on your skin. These are alignment marks, also called tattoos, 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. If you are having proton beam therapy, you will also have an MRI scan of your pelvis.

If you need an MRI scan, this will be detailed in your appointment letter. The MRI scan process is very similar to the CT scan. An MRI scan normally takes 30 to 40 minutes. The radiographers will talk you through the process, so you know what to expect. 8 During the scans you may be given an injection of a contrast agent that will help us see your organs and vessels more clearly. The doctor will use these images alongside other scans you will have had to decide on the exact area for treatment.

You will not feel anything during the scans. All we ask is that you lie still and breathe normally.

After the scans are completed, you will be free to leave. 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 patients will be given drug treatment (chemotherapy) before or during their radiotherapy. Your doctor will tell you which chemotherapy you will be having. Patients receiving chemotherapy in addition to radiotherapy may experience additional side effects to those listed here, depending on the drug regimen used.

It is possible the use of chemotherapy may increase the likelihood of nausea with your treatment. It may also cause other side effects. The doctors will discuss these issues with you. 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 do not hesitate to ask for help.

Patients will normally receive their treatment as an outpatient. Treatment is every day, Monday to Friday, including Bank Holidays. Your clinical oncologist or specialist 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.

For each treatment session you will be asked to change into a hospital gown and remove all clothing from the waist down apart from your underwear. The radiographers will position you on the treatment couch with specialised pillows under your head and legs and ensure you are in the correct position. The radiographers will place a modesty cover over your pelvic area and lower your underwear. They will ensure you are in the correct treatment position by aligning the tattoo marks on your pelvis with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan.

Once you are in the correct position, and the final checks completed, the radiographers will leave the room. The radiographers will take X-rays and CT scans before your treatment. These images are to check your treatment remains accurate. When treatment is being delivered, the machine 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 and breath normally.

The radiographers will be watching you at all times on a closed-circuit television. You will be able to speak to them at any time via a two-way intercom.

Once your treatment has finished, the radiographers will come back in to the room and help you off the couch. You will then be free to get dressed and leave the department. Treatment time is dependent on whether you are having radiotherapy with photons or with protons. If you are having photon treatment each session takes approximately 15-20 minutes. If you are having proton beam therapy the treatment may be a little longer and can last up to 60 minutes.

The treatment radiographers will confirm with you how long the treatment is expected to take before they start.

Although you will not feel anything during treatment, there will be some side effects which will gradually start during your treatment, shortly after completing treatment and usually resolve within two to three months of finishing treatment. These effects will vary from patient to patient.

The risk and severity of side effects occurring will depend on the dose of radiotherapy given and the exact area which receives the radiotherapy. Your doctor 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.

Skin changes

The skin in the area being treated may gradually change colour. Your skin may 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. You may notice the skin between your legs and around your back passage becoming red and sore. Some people may develop an irritation or itch around their back passage.

During treatment, we recommend that you wash using warm water and the soap products you would normally use. It is not advisable to sit and soak in a hot bath. Gently pat your skin dry with a soft towel. Gently press the towel around your pelvic area. 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 treatment. If your skin becomes irritated or peels, stop using the moisturiser. You will be referred to the radiotherapy review team for appropriate skin care. If you do not currently use a moisturiser, please speak with your radiotherapy team and they will be able to suggest some options for you.

Avoid exposing the skin in the treatment area to strong sunlight or extreme temperature changes during treatment.

Hair loss

Hair loss can occur in the treatment area, so you may lose some pubic hair. It usually grows back several months after treatment has finished. Do not wax or your use cream or laser hair removal in your pelvic area during radiotherapy.

Effects on the bowel

Your stools may 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 treatment.

We advise that you continue to eat a normal diet and try to drink plenty of fluids, at two litres per day. If the diarrhoea becomes persistent, please inform a member of staff as soon as possible as medication can be prescribed.

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. About three to four weeks into treatment you may experience some discomfort and pain on opening your bowels. This is called proctitis.

Very occasionally, this may be associated with a feeling of wanting to strain (whether or not you actually need to pass a bowel movement). This is called tenesmus. There may be some blood and mucus (slime) in your stools. Tell the radiographers, your specialist radiographer or the radiotherapy review team if you experience such a problem as medication can be given.

Effects on the bladder

You may find that you have to pass urine more often both day and night. There may be slowing of the stream, and you may have a burning sensation when you do pass urine. This is called radiation cystitis and is caused by the radiotherapy inflaming a small area of your bladder. If you experience a burning sensation, please inform the radiographers or radiotherapy review team. They will ask you to produce a urine sample 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. Reducing drinks that may irritate the bladder such as fizzy drinks, alcohol, and drinks containing caffeine (tea, coffee and cola) may also help.

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.

Feeling sick

Radiotherapy to the pelvis may make you feel sick (nauseous). This may be worse if you are having chemotherapy at the same time. If you are feeling sick, and/or are being sick, please let someone know as medication can be prescribed.

During treatment your vagina and vulva may become irritated, which can cause discomfort, soreness and narrowing. You may notice an increase in vaginal discharge. Please let your doctor, specialist radiographer or the radiotherapy review team know if this is heavy and/or has an offensive odour.

Do not use tampons, feminine deodorisers, douches or talc as they could cause further discomfort and soreness and possible increase the risk of infection. If you feel like it, having sexual intercourse during treatment is ok.

If appropriate, you will need to take adequate contraceptive precautions. Your doctor or specialist radiographer will discuss this with you.

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 assessed on a weekly basis by your doctor, your specialist radiographer or the review team. They will monitor your side effects and review your progress.

Late side effects incurred during treatment can appear to develop months or years after radiotherapy has finished. They are the hardest to predict accurately 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 frequencies are approximate. The effects may include:

Bowel changes

Around 50% of people notice permanent changes in their bowel habits. You may find that your stool motions are looser, urgent or more frequent than before treatment. Sometimes medication may be needed to regulate your bowel on a longer-term basis. It is quite common to experience a straining feeling (proctitis). Very rarely (less than 1%) scar tissue may develop which can affect the bowel and add to the problems of diarrhoea.

Very occasionally, however, after surgery and radiotherapy, or proton beam therapy, the tissue surrounding the bowel can stick together (adhesions) causing a blockage, and 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.

Bladder changes

Very rarely, scar tissue may develop in the wall of the bladder which can cause some shrinkage of the bladder is in the treatment field. You may find that you have to pass urine more frequently than before treatment. You may find it difficult to “hold on” requiring you to get to a toilet more urgently.

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 clinical team or GP know as they may wish to arrange further tests.

Please tell your clinical team or GP if you experience any bowel and/or bladder problems so you can be assessed and referred for specialist advice if needed.

Fertility

Radiotherapy or proton beam therapy to the pelvic area can cause infertility and affect sperm production. However, if you or your partner are able to have children, you must use birth control (contraception) to prevent pregnancy during your treatment.

Ovaries (for pre-menopausal individuals)

If you have a uterus and are still having periods before radiotherapy, you will go through an early menopause due to the effects of the radiotherapy on your ovaries. As a result of this you will become infertile (unable to become pregnant).

An early menopause is different to a natural menopause, as there is a sudden change in your hormone levels. The symptoms of an early 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, fatigue, lack of energy, anxiety, irritability, night sweats, vaginal dryness and loss of libido.

There are a variety of treatments for menopausal symptoms, including hormone replacement therapy (HRT), in some cases, and many complementary therapies. You can discuss the options with your clinical team.

It is important you tell your doctor if you want to have children in the future, as they will arrange an urgent appointment with a fertility doctor before your treatment starts.

Sperm

If you have testes, before your treatment begins, you be asked if you wish to store a sample of sperm for future use. The sperm can be saved for several years in a frozen form.

Sexual function for women

Treatment can cause long term changes to your sexual function. Radiotherapy and proton beam therapy can affect the cells that produce the natural lubricant in your vagina. And you may experience vaginal dryness. This can make sexual intercourse uncomfortable. This can be helped by using a vaginal moisturiser and/or lubricant.

Treatment can affect the muscles of the vagina, causing them to lose their flexibility. This may result in your vagina feeling tighter and smaller. This can make sexual intercourse and vaginal examinations in follow up clinics more difficult and uncomfortable. After pelvic radiotherapy or proton beam therapy, your specialist nurse will talk to you about the introduction of pelvic care. The aim of pelvic care is to reduce the formation of scar tissue to ensure vaginal examinations and sexual intercourse are not difficult and/or uncomfortable.

The use of a vaginal dilator can help keep the vagina open (dilated), to prevent the formation of scar tissue in the vagina. You will be contacted by your specialist nurse and asked to attend a nurse-led end of treatment clinic, usually four to six weeks after treatment has finished. At this appointment they will talk to you about dilator use and you will be given an opportunity to raise any concerns at this point in your treatment journey.

Sexual function for men

You may notice it is more difficult to achieve an erection or ejaculate following a course of treatment. This is more common in those over the age of 50 and may be permanent. Treatment is available in the form of medication from your GP, or a referral to your local erectile dysfunction clinic.

If this is a concern for you or your partner, please discuss it with your clinical team. Your clinical team may suggest you avoid having anal sex during and after treatment. If you have bowel problems or a sensitive anus after treatment you may want to wait until symptoms have settled before trying anal sex again.

Although, problems in the back passage may settle down after a few months there can be some permanent damage leading to leakage and incontinence. If this is a concern for you and your partner, please let your clinical team know so that this can be discussed further with you .

Continuing to have an active sex life during and after pelvic treatment can be difficult for both you and your partner. You may lose interest or have less confidence, or it may be that there are other things 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 may 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.

Please don’t be embarrassed to talk to your clinical team. We are here to help you and are experienced in dealing with these problems and can refer you to an appropriate specialist to discuss the treatment options.

Lymph nodes

Radiotherapy, proton beam therapy and surgery can affect the lymphatic vessels in the pelvis and upper legs causing them to become narrowed. The lymph fluid in the body cannot drain properly, and this can cause swelling, or lymphoedema, in the legs or, very rarely, the pelvis. After having treatment, it is important to look after your legs.

Pay particular attention to any cuts, grazes or insect bites and use an antiseptic lotion to minimise the risk of infection. Regularly use a moisturiser to keep your skin healthy.

If you notice any swelling in your feet, legs or pelvic area, it is important to let your clinical team or GP know.

Bones

Treatment can affect the density of your bones in the treated area. It causes fine, hair-like cracks in the bone called “pelvic insufficiency fractures”. This may occur a few months to a few years after treatment. It can cause a dull, constant ache in the pelvis. These fractures can be treated with drugs, exercise and a diet rich in calcium.

Rarely, the pain may be severe and may require regular pain medication. Let your clinical team or GP know if you experience any pain in your pelvis, as they will need to do further investigations.

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 very small risk for most patients.

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 and proton beam therapy departments there will be access and support from your specialist radiographer, the radiotherapy review team, the Macmillan information and support 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.

Toilet cards are available, which may make it easier to access toilets in places where there are no public toilets.

These are available from Macmillan Cancer Support, but we do keep a stock in the department. Please ask a member of staff if you would like one.

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 and any other side effects for about ten to fourteen days after radiotherapy.

You will receive a follow-up appointment to see the radiotherapy doctors in four to six weeks’ time. This will either be at University College Hospital or your referring hospital.

Please feel free to contact your specialist nurse, your specialist radiographer or the radiotherapy or proton beam therapy department if you are worried about your treatment side effects.

My Keyworker is:

They can be contacted on:

Proton Beam Therapy Reception
t: 020 3456 8000/8001

Proton Beam Therapy Review Team (via Proton Beam Therapy Reception)
t: 020 3456 8000/8001

Proton Beam Therapy Macmillan Support Workers
t: 079776 74956
e: uclh.pbtinformationandsupport@nhs.net

Radiotherapy reception
t: 020 3447 3700/ 020 3447 3701

Radiotherapy Review Team (Via Radiotherapy reception)
t: 020 3447 3700/01

Radiotherapy Macmillan Support Workers
t: 07816 096619
e: uclh.radiotherapyinformationandsupport@nhs.net

Out of hours oncology advice number (available 24 hours)
t: 07947 959020

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

Sarcoma UK
t: 0808 801 0401
e: supportline@sarcoma.org.uk
w: www.sarcoma.org.uk

The London Sarcoma Service
t: 020 3447 4821
w: www.londonsarcoma.org

Young Lives vs Cancer (formerly CLIC Sargent)
t: 0300 330 0803
w: www.younglivesvscancer.org.uk

Shine Cancer Support
t: 07804 479413
e: hi@shinecancersupport.org
w: shinecancersupport.org

Trekstock (for young adults in their 20s and 30s with cancer)
t: 020 4541 7601
e: hello@trekstock.com
w: www.trekstock.com

Live Though This (LGBTIQ+ Cancer Support)
w: www.livethroughthis.co.uk/

Maggie’s (Providing cancer information and support in centres across the UK and online)
w: maggies.org

Life After Cancer
w: www.life-aftercancer.co.uk

Macmillan Cancer Support
t: 0808 808 0000
e: cancerline@macmillan.org.uk
w: www.macmillan.org.uk

Cancer Research UK
t: 0808 800 4040
w: www.cancerresearchuk.org

Carers UK
t: 0808 808 7777
e: adviceline@carersuk.org
w: www.carersuk.org

NHS Choices
w: www.nhs.uk

UCLH cannot accept responsibility for information provided by other organisations.