Series No 62 - Proton Beam Therapy to the Prostate : University College London Hospitals NHS Foundation Trust

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This page has been written for patients who are receiving proton beam therapy (PBT) to the prostate. It explains what the treatment involves, the preparation we require you to do before treatment, describes side-effects you may experience during and after treatment, and how best to cope with them.

Before starting PBT planning and treatment you will need to have a rectal spacer inserted. Your consultant will give you more detailed information about having a rectal spacer inserted. It is important that you understand and follow the instructions for preparation given to you.

We understand this is a worrying time for patients and their families, and we hope this information can help to answer any questions you have. If you have any questions about the treatment or information on this page, please speak to the team looking after you.

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.

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 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. At University College Hospital, we also treat private patients through Proton International. 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.

All types of radiotherapy work by damaging cancer or tumour cells in the part of the body being treated. The radiation stops the cancer cells from dividing and, therefore, 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 minimise the radiation dose to a person’s healthy cells.

The delivery of PBT 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 seven weeks. Your treatment schedule will be decided by your doctor and confirmed on your first treatment visit to the PBT.

The prostate is a gland about the size and shape of a walnut. The prostate gland is in front of the rectum, just below the bladder and it surrounds the urethra (Fig 1). The urethra carries urine from the bladder out through the penis.

Before starting planning and treatment you will need to follow special instructions on preparing your bladder and bowels.

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.

Daily bowel preparation during your treatment is important because:

It will improve the accuracy of your treatment.
It may help reduce the risk of any bowel side effects.

When having PBT to the prostate it is important that you have a comfortably full bladder and maintain a similar bladder size for each treatment. The reasons for this are:

A larger bladder will limit the amount of bladder and small bowel in the treatment area which will help to reduce any side effects you may experience.
It will help maintain treatment accuracy.

One week before your planning appointments you will have a prostate education session. The education session is to help you understand more about the importance of the preparation process. This will either be via an online Zoom presentation or a phone consultation.

Bladder preparation

Hydration is essential for your PBT treatment, including the planning scans. One week before your scans, increase your fluid intake so that you are well hydrated. Drink at least two litres of water every day. It is possible to add squash or juice if this makes the water more palatable.

You will need a comfortably full bladder for your planning scans and treatment. You will be asked to drink a specific amount of water before each appointment.

We recommend that you do not drink more than two cups of tea or coffee per day, as caffeine will irritate your bladder. Try switching to decaffeinated drinks and/or herbal teas. Try to reduce your alcohol intake. Please ask your clinical team for further advice.

At your planning scans, you will be asked to drink 250mls of water and comfortably hold in your bladder for 30 minutes prior to your scan. This will be asked of you every day for treatment.

Bowel Preparation

A daily micro-enema is required to maintain an empty rectum throughout your treatment. This must be carried out even if your regular bowel motions have occurred. It is important to bring your enemas for all appointments, including your planning scans.

You will be prescribed daily micro-enemas to prepare your rectum for treatment. The micro-enema causes your rectum to empty with a bowel movement or passing of wind. The micro-enema will need to be inserted into your rectum. You will be asked to do this for yourself.

You will be asked to practice inserting the micro-enemas for two days before your planning scans.

Once you have had your scan, you will not need to insert the micro-enemas until the first day of your PBT treatment.

A micro (small) enema is medication which will cause your rectum to empty with a bowel movement or passing of wind. The micro-enema is contained in a small tube with a nozzle and is designed for easy insertion into the anus (back passage). The medication (5mls) is inserted into your rectum via the nozzle.

Although the prospect of using a micro-enema everyday sounds unpleasant, most patients tolerate it well.

Go to the toilet with the micro-enema and remove the cap. To make it easier to insert the nozzle into your rectum, squeeze out a drop of fluid and spread it over the nozzle. Gently insert the nozzle fully into your rectum and squeeze out all the contents of the tube.

Keep squeezing the tube as you remove the nozzle. This action prevents the medication from being drawn back into the nozzle. The need to have a bowel movement is usually felt within 10-15 minutes. If you suffer from haemorrhoids or have problems inserting the micro-enema, please speak to your clinical team. Please see the contact details at the end of this booklet.

Before beginning PBT, your treatment must be carefully planned. Your first visit will be to the PBT pre-treatment department. At this appointment you will have CT and MRI scans 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. It is important to bring your micro-enemas with you. At this appointment the planning radiographers will ask you to:

Empty your bladder.
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.
Drink 250mls of water, after you have emptied your bowels. This is available in the waiting area. Do not do this until instructed by a radiographer.
Wait for 30 minutes, to allow for your bladder to comfortably fill. Please do not go to the toilet during this time.
After 20 minutes, one of the planning radiographers will scan your bladder using a small ultrasound machine. This will tell us if there is enough urine in your bladder for us to continue with the planning scans. If not, we may choose to wait longer to allow your bladder to fill.
Once ready, you will be asked to change into a patient gown and remove all your clothing below the waist. This includes your underpants. Alternatively, if you would like to bring in your own dressing gown from home then you may do so.
You will have a CT scan first. The radiographers will place you in the position they want you to be in for treatment and draw pen marks onto your skin and take some measurements. These are for reference only and can be removed when you go home. Your consultant may or may not have requested for you to have some contrast for this CT scan. The radiographers will inform you of this on the day.
Once the CT scan has been completed, the radiographers will give you three small tattoos on your pelvis. The tattoos are alignment marks 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.
After the CT scan, you will have an MRI scan to provide more detailed images to help the team plan your treatment.
You will then be free to go home.

Please allow around two hours for your planning appointment.

Patients will normally receive their treatment as an outpatient. Treatment is every day, Monday to Friday, including Bank Holidays. Your clinical oncologist 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. Please ensure you continue to drink two litres of water per day.

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.

At each treatment appointment you will need to:

Empty your bladder.
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.
After emptying your bowels, the radiographers will tell you when to start drinking 250mls of water. This is available in the waiting area.
Wait 30 minutes, to allow for your bladder to comfortably fill. Please do not go to the toilet during this time.
Before your treatment, one of the radiographers will scan your bladder to check it is full enough.

For each treatment session you will be asked to change into a patient gown and remove all your clothing below the waist. This includes your underpants. 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 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. The radiographers will take X-rays and CT scans before your treatment. These images are to check your treatment remains accurate. Once you are in the correct position, and the final checks completed, the radiographers will leave the room.

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 up to 40 minutes.

Once your treatment has finished, the radiographers will come back into the room and help you off the couch. You will then be free to get dressed and leave the department.

If you have any difficulty following the instructions, please discuss this with the radiographers treating you. There may be various reasons for this problem, including side effects to your bladder and bowels. You should only modify the routine for your bladder/bowel preparation after discussion and agreement with your clinical team.

If you still have any questions or concerns, please let your clinical team know. We are here for you.

Do I need to use the micro-enemas over the weekend?

No, you only use the micro-enemas on the days that you attend for your radiotherapy treatment.

Can I eat after inserting a micro-enema?

Yes, you can eat normally after inserting a micro-enema.

Even if I have emptied my bowels naturally, do I still need to use a micro-enema before my treatment?

Yes, even if you have already opened your bowels naturally on the day of your treatment, you will still need to use a micro-enema to make sure your rectum is empty.

Are there any foods I need to avoid, or a special diet that I need to follow?

There is no specific diet to follow, but it would be advisable to avoid foods that you know may give you wind/cause bloating.

Can I have sex while having radiotherapy to my prostate?

Yes, you can have sex while undergoing treatment to the prostate.

Although you will not feel anything during treatment, there may be some side effects which will gradually start during or shortly after completing PBT and usually resolve within two to six 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 PBT given and the exact area which receives the PBT. Your consultant 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.

You may get two circular areas of changed skin pigmentation at the beam entry points.

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.

PBT 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 PBT review team for appropriate skin care.

Bladder

You may find that you have to pass urine more often both day and night and have 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.

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 you can be prescribed medication to help.

Hair loss

Hair loss can occur in the treatment area, so you may lose some pubic hair. Any hair loss will be permanent at the beam entry points.

Tiredness

Tiredness is a very common side effect of PBT. 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, and continuing with your daily routine. Fatigue usually improves within 3 months.

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 PBT review team and/or PBT clinical fellow who will monitor your side effects and review your progress.

Late side effects can develop months or years after radiotherapy has finished. If they do occur, they are usually permanent. Your doctor will explain the risk of long- term side effects with you.

Bowel changes

Some patients experience permanent changes in their bowel habits after PBT. 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.

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 clinical team for more information.

Very rarely (in less than 1% of men) scar tissue may develop which may affect the bowel and add to the problems of diarrhoea. There may also be injury to the muscle that opens and closes the anus, or an opening (fistula) between the bowel and urethra.

There are 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 PBT. Rarely, some patients may develop a urethral stricture, which causes 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 clinical team if you experience difficulty passing urine.

Very rarely (in less than 1% of men), patients may experience leakage of urine (urinary incontinence) after radiotherapy. In the majority of cases this improves over time. If you are worried about this, please discuss it with your clinical team.

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

PBT 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 PBT 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.

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.

Your penis may become a little shorter and change shape slightly.

You may find it very difficult and embarrassing to talk about concerns around sex. Please remember your clinical team can 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

PBT is likely to make you infertile. However, this is not inevitable, and you should always consider using contraception. Please let us know about your plans for having children as you can be referred for sperm storage and given specialist advice.

Second malignancy

The use of PBT 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 in less than 1% of patients.

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 booklet deals with the physical aspects of your treatment, but your emotional wellbeing and that of your family is just as important.

Having treatment can be distressing for some patients. Within the PBT department there will be access and support from your consultant, the PBT 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.

Any side effects you are experiencing may continue after treatment has finished. It is common to experience a worsening of the side effects for several weeks after radiotherapy. You will be reviewed by your clinical team around three months completing your radiotherapy.

Up to three weeks after PBT, please contact the PBT review team if you are worried about any treatment side effects. After this time, please contact your consultant.

If you have been provided with a physical copy of this page, you can fill in the details below.

My Clinical Oncologist is:

My Keyworker is:

Proton Beam Therapy Review Team (via Proton Beam Therapy Reception)

t: 020 3456 8000/8001

Proton International Pathway Co-ordinator

t: 020 3456 8562

Proton Beam Therapy Reception

t: 020 3456 8000/8001

Dr Mitra’s patients

Laura Falconer

t: 07702 104384