Series No. 5 - Radiotherapy to the prostate or prostate bed

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.

1. You will see a clinical oncologist or consultant urology radiographer who will explain your diagnosis and discuss treatment options with you.
2. You will be consented for radiotherapy.
3. Prostate Education Seminar - You will be invited to a prostate education seminar to discuss preparation for treatment and to answer any questions you may have.
4. Radiotherapy treatment planning appointment - You will have a planning CT scan using intravenous contrast dye if required. You may also have an MRI scan.
5. First treatment - You will start treatment about three weeks after the planning scan. Each appointment will take approximately 30-40 minutes.
6. Review clinics - You will be reviewed once a week during treatment. This will either be face-to-face or via phone. All review clinics are in the radiotherapy and are timed with your treatment.
7. Treatment complete - You will be reviewed by your clinical team, as an outpatient, three months 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.

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

Radiotherapy is the specialised treatment of cancer (and some other diseases) using high energy radiation beams.

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. Doctors 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 women. 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 will last four to eight weeks. Your treatment schedule will be decided by your doctor or consultant urology radiographer and confirmed on your first treatment visit to the radiotherapy department.

Before starting planning and treatment you will need to follow special instructions on preparing your bladder and bowels. Daily bowel preparation during your treatment is important because:

• It will improve the accuracy of your treatment.
• It may reduce the risk of any long-term bowel side effects.

You will be given a booklet called “Having radiotherapy to the prostate/prostate bed: preparation for treatment”. The booklet contains special advice on bladder and bowel preparation.

It is important that you understand and follow the instructions for treatment preparation given to you. If you have any difficulty following the instructions, please discuss this with a member of the team. We are here for you.

Before beginning radiotherapy or proton beam therapy, your treatment must be carefully planned. Your first visit will be to the radiotherapy or proton planning 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.

You can eat and drink normally before you come for your planning CT scan. You will be asked to bring your micro-enemas with you. These will be prescribed before treatment and are used to empty your bowel. At this appointment the planning radiographers will ask you to:

• Insert a micro-enema and wait for your bowels to empty. The need to have a bowel movement is usually felt within 10-15 minutes. Even if you have already opened your bowels on the day of your scan, you will still need to use a micro-enema to make sure your rectum is empty.
• Empty your bladder.
• Drink five cups of water, after you have emptied your bladder. This is available in the waiting area. Do not do this until instructed by a radiographer.
• Wait for 30 -45 minutes, to allow for your bladder to fill (comfortably), before you have your radiotherapy planning scan. If you do not feel your bladder is full after 30-40 minutes, please tell the radiographers.

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.

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

During the scan 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.

Please allow around 2 hours for your planning CT appointment.

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

You will need to follow the same bladder and bowel preparation as you did when you came for your treatment planning.

For each radiotherapy appointment, you should allow up to two hours. You should aim to arrive at least an hour before your given treatment appointment time, to allow for the above process. It is important that you understand and follow the instructions for treatment preparation given to you.

• Insert a micro-enema and wait for your bowels to empty. The need to have a bowel movement is usually felt within 10-15 minutes. Even if you have already opened your bowels on the morning of your treatment appointment, you will still need to use a micro-enema to make sure your rectum is empty.
• Empty your bladder.
• After emptying your bowels and bladder, the radiographers will tell you when to start drinking the prescribed amount of water that you drank at your planning CT scan. This is available in the waiting area.
• Wait the prescribed amount of time advised at your planning CT scan, to allow for your bladder to fill (comfortably), before you have your radiotherapy treatment.

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. Each treatment session will take around 20 minutes.

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.

Although you will not feel anything during treatment, there will be some side effects which will gradually start during your radiotherapy or shortly after completing radiotherapy and usually resolve within two to six months of finishing radiotherapy. 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 around your back passage becoming red and sore. Some people may develop an irritation or itch around their back passage.

During treatment, we advise 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.

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.

Bowel changes

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. Inform the radiographers or nurses if you experience such a problem as medication can be given. You may also experience abdominal pains or colicky or wind pains.

Your stools may become loose as you progress through treatment. In some cases, this may lead to diarrhoea. We advise that you continue to eat a normal diet and try to drink plenty of fluids (at least 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.

Bladder

In 50%-100% of men, you may find that you have to pass urine more often both day and night and have urinary urgency (having a sudden urge to pass urine). Try reducing your fluid intake a few hours before going to bed. You may have a slower flow compared to normal. 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 tell the radiographers or radiotherapy review team. They will get 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.

In the unlikely event that you are unable to pass urine, also called urinary retention, you should seek urgent medical attention. You should attend your local emergency department. You may require a urinary catheter to be fitted. If you notice an increase in blood in the urine, seek medical attention immediately.

Tiredness

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

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

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

At your first treatment appointment the radiographers will discuss the treatment with you and explain any possible side effects you may experience. They will see you every day and ask how you are and how you are feeling. During treatment you will be assessed on a weekly basis by the radiotherapy review team who 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

Some patients experience permanent changes in their bowel habits after radiotherapy. You may find that your stools are looser or have urgent or more frequent motions 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 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.

If you are to undergo any investigation of your bowel in the future, please ask your bowel specialist to contact your oncology consultant before you have any biopsies of your bowel. If you receive anal sex, then bowel problems, including pain during intercourse, may be a particular issue.

If you do have bowel problems, wait until these have improved before trying anal play or sex. Talk to your doctor, specialist nurse, or specialist radiographer for more information.

Very rare side effects include bladder or bowel damage, injury to the muscle that opens and closes the anus, or an opening (fistula) between the bowel and urethra. There are many people you can talk to about these symptoms and ways to manage them, so please ask. We are here to help.

Difficulty passing urine

Some patients find they have to pass urine more frequently than before radiotherapy. Very rarely, some patients experience difficulty passing urine. This is because the treatment causes a narrowing of the tube from the bladder to the penis (the urethra). This is called a stricture. In extreme cases you may not be able to pass urine at all. This can be treated by stretching the stricture under an anaesthetic. It is important to inform your doctor if you experience difficulty passing urine.

Very rarely (less than 1%) some patients may experience leakage of urine (urinary incontinence) after radiotherapy, and in the majority of cases this improves over time. If you are worried about this, please discuss it with your doctor. They will be able to refer you to a continence advisor at the hospital or in the community.

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.

Male sexual function

Radiotherapy can damage the nerves that control getting an erection, and it can take up to two years after your radiotherapy treatment for the damage to appear. About half of all people treated with radiotherapy find that their sexual function declines after treatment. This risk increases further still if you had any difficulties prior to treatment, have had a radical prostatectomy (the prostate surgically removed) or if you are receiving hormone therapy. This side effect of treatment can be very difficult to deal with and can affect your relationship with your partner and your sex life.

Following treatment, you may experience a loss of orgasm or have a ‘dry orgasm’ where you have the sensation of an orgasm, but don’t produce any semen or you may notice a reduced amount or altered consistency of semen.

You may also notice a change to your penile length and appearance.

You may find it very difficult and embarrassing to talk about impotency and sexual issues. Please remember that your doctor has treated many other patients with similar problems. It is possible to offer help and support, and to refer you to an appropriate specialist to discuss the treatment options. Please do not hesitate to ask for help.

Infertility

Radiotherapy is likely to make you infertile. Please let us know about your plans for having children and you can be given specialist advice.

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- less than 1%.

Other rare late side effects (less than 1%) which your doctor will be able to discuss with you include:

• Pelvis/hip bone thinning and/or fractures.
• Fluid build-up, also called lymphoedema, in your legs and potentially your scrotum if your pelvic lymph nodes have been treated.
• Damage to nerves, also called neuropathy, which can cause pain, numbness or weakness in your legs.

This page deals with the physical aspects of your treatment, but your emotional wellbeing and that of your family is just as important. Having treatment can be deeply distressing for some patients. Within the radiotherapy department there will be access and support from your consultant radiographer, specialist nurse, the radiotherapy review team, the Macmillan radiotherapy 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 and Prostate Cancer UK, but we do keep a stock in the department. Please ask a member of staff if you would like one.

The prostate cancer support group provides a safe space to talk to others, share experiences or simply listen. The group is facilitated by a support and information specialist and a clinical nurse specialist. The group meets on the 2nd Thursday of each month, from 12.30pm to 2.30pm. You can join either in person, at the Macmillan Support and Information Service, or online (on Zoom).

For more information or to book your place:

• call 020 3447 3816
• email uclh.supportandinformation@nhs.net (please include your full name, hospital number and the group you'd like to join in your email)
• visit the Macmillan Support and Information Service, on the ground floor of the Macmillan Cancer Centre.

All 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.

My Clinical Oncologist/ Consultant Radiographer is:

My Uro-oncology Clinical Nurse Specialist (CNS) is:
t: 020 3447 7151

For advice about treatment side effects
Radiotherapy review team (via radiotherapy reception)
t: 020 3447 3700/01

For any other question about your condition
Uro-oncology CNS team
e: uclh.uro-oncology.cns@nhs.net

For information about appointments
Radiotherapy reception
t: 020 3447 3700/ 020 3447 3701

For information, support, or any other queries
Macmillan support and information team
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
w: www.uclh.nhs.uk

Prostate Cancer UK
t: 0800 074 8383
e: helpline@prostatecancersupport.info
w: www.prostatecanceruk.org

Tackle Prostate Cancer
t: 0800 035 5302
e: helpline@tackleprostate.org
w: www.tackleprostate.org

ORCHID Fighting Male Cancer
t: 0808 802 0010
e: helpline@orchid-cancer.org.uk
w: www.orchid-cancer.org.uk

Errol McKellar Foundation (Black Afro-Caribbean men with prostate cancer)
w: www.theerrolmckellarfoundation.com/

Metro Walnut (peer support group for LGBTQ people with prostate cancer)
w: www.metrocharity.org.uk/community/metro-walnut

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

Continence Foundation
e: info@continence-foundation.org.uk
w: www.continence-foundation.org.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.