Information alert

If you need a large print, audio, braille, easy-read, age-friendly or translated copy of this page, email the patient information team at uclh.patientinformation@nhs.net. We will do our best to meet your needs.

PBT_guide_for_patients_carers_1.PNG

PBT_guide_for_patients_carers_3.PNG

PBT_guide_for_patients_carers_4.PNG

Proton beam therapy (PBT) is an advanced form of radiotherapy. Protons are small particles found in the middle of atoms. Protons can treat a tumour with limited damage to surrounding tissue. PBT is different to photon radiotherapy. Photon radiotherapy uses high energy X-rays not protons.  

A machine called a cyclotron produces the proton beam. The PBT is delivered through a machine called a gantry. While you lie on a treatment couch, the gantry can rotate through 360 degrees. So, the proton beam can be accurately directed to the area needing treatment. 

PBT_guide_for_patients_carers_5.PNG

Although relatively new to the UK, PBT has been used to treat complex child and adult cancers around the world for many years. UCLH is proud to be one of only two NHS PBT departments in the UK. The second NHS PBT department is at The Christie Foundation Trust in Manchester. The Christie has been treating patients using PBT since 2018. 

Our multi-disciplinary team includes doctors, physicists and radiographers. They have had extensive specialist training, and work with world leading PBT centres to deliver PBT safely and accurately to our patients. 

At UCLH, the gantries use pencil-beam scanning. Pencil-beam scanning uses a narrow beam of protons to move back and forth across the cancer. The energy of the beam varies depending on how deep the cancer is. Your doctor, also called a clinical oncologist, may use PBT alone or they may combine it with photon (X-ray) radiation therapy, surgery, and/or chemotherapy.

The potential benefits of PBT are: 

  • It can treat the cancer without damaging healthy tissues around the cancer. PBT is often used to treat cancers in children and young people, since damaging healthy tissue can cause more problems. 
  • A higher radiation dose can be given since it damages less healthy tissue than photon radiotherapy. This may stop the cancer growing or spreading. 
  • You may have fewer and less severe side effects during and after treatment. 

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 have PBT 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 speak to the team looking after you. 

At any time before you start treatment, you can discuss anything that you do not understand, or ask any questions with your clinical oncologist. Should you decide to withdraw your consent for PBT, the PBT team will discuss the possible alternatives with you.

Both during and following your PBT we aim to provide the highest standards of care. We support you in your decisions regarding your treatment. We will always 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 your treatment. If you have any concerns about this, please talk to the radiographers. We try to be sensitive to everyone’s needs, so please discuss things with the team caring for you.

LGBTQ+ Patients

UCH recognises different ways that people describe and identify with their gender and sexuality.

Please let us know what your preferred name is, how you want to be referred to, which pronoun(s) you use to describe yourself and anything else you think we might need to know to ensure you are well looked after and comfortable at UCLH. 

If you are 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 PBT. 

If you are capable of conceiving a child (have testes), you should not try to have a baby for at least four months after PBT. You should use reliable contraception during PBT and for four months afterwards. 

If you have any further questions or concerns about this, please talk to your clinical oncologist, your specialist nurse or specialist radiographer involved in your care.

If you have a pacemaker, you should let your clinical oncologist, key worker and/or radiographers know. This does not stop you from having treatment, but you may need simple additional monitoring.

The PBT bookings team will contact you to tell you about your appointments. They will then send you an appointment letter and information pack. 

You will get a key worker who will give you help and support throughout your treatment. The key worker will call you before your first appointment to discuss any questions or worries you may have. 

Your first appointment at the PBT department at UCH is for an assessment. At the assessment visit you will meet your clinical oncologist and key worker. They will discuss your treatment plan and get your consent to have PBT. 

After you have signed a consent form, you will have treatment planning appointments so the team can plan your PBT. These appointments will be completed over five days.

Assessment

PBT_guide_for_patients_carers_6.PNG

You will meet a lot of people who are part of your clinical team at this appointment. They are all involved in making sure you get the best clinical treatment. You will meet them all at your first appointment, so you have fewer appointments at UCLH. They are likely to include: 

  • A consultant clinical oncologist, in charge of your PBT at UCLH. They will explain what PBT is and will ask for your consent to have PBT. 
  • The specialist radiographer. They are your key worker. 
  • Medical oncologists and cancer nurses (if you are having chemotherapy as well). 
  • The PBT review team. This team includes specialist radiographers and nurses. They will see you during treatment to help you to manage the side effects of PBT. 

Treatment planning

Your treatment planning appointment is where we gather all the information we need to plan your PBT.

When you have PBT planning and treatment appointments, you have to lie very still. This helps us to aim the treatment at the correct part of your body. To help you to keep still and in the correct position, you may have to have a mask or immobilisation device made. 

The type of mask or immobilisation device will depend on the area of your body being treated. The radiographers will decide what is best for you. We will give you more information about how the mask or immobilisation device is made at your treatment planning appointment. 
 
PBT_guide_for_patients_carers_7.PNG

You will have a PBT planning CT scan, so the doctors and radiographers can plan your treatment. You will have some contrast agent injected into your arm. This may be through a temporary cannula or, if you have been having chemotherapy, through your PICC line. The contrast agent makes the images taken during the CT scan clearer so that the PBT team can accurately plan your treatment.

PBT_guide_for_patients_carers_8.PNG

After the CT scan the radiographers will mark your skin with small permanent dots. We call these dots tattoos. The radiographers will place a dot of ink on your skin and gently scratch the surface of your skin with a fine needle. The tattoos are about one millimetre wide. They are used to place you in the correct position each time you have treatment. 

PBT_guide_for_patients_carers_9.PNG

You may also have an MRI scan. If so, the appointment will be on your letter. The MRI scan process is very similar to the CT scan. You will be given headphones so you can listen to music during the scan. You can also select different coloured lighting and animations to watch, to help you feel more relaxed during your scan. An MRI scan normally takes 30 to 40 minutes. 

Once all the scans are completed the doctors, physicists and radiographers will work together to plan the best way to treat you. You will need to wait up two to three weeks to start your PBT. 

PBT_guide_for_patients_carers_10.PNG

There may be other appointments you need to attend during the assessment and planning visit. These may include appointments with a: 

  • Physiotherapist. 
  • Occupational therapist. 
  • Speech and language therapist (SALT). 
  • Dietitian. 
  • Social worker. 

Once you have attended all the assessment and planning appointments, you will get your treatment appointments. You will return home and come back to UCH when treatment is ready to start.

Proton beam therapy is usually given Monday to Friday, including Bank Holidays, but there may be times when your treatment needs to be given over the weekend. Appointment times will be from 7am to 9pm and will be booked in advance.

At your first treatment appointment, come to the reception of the PBT department on floor B3. Once checked in, they will ask you to go to the PBT waiting area on floor B4. When it is time for your treatment you will meet a treatment radiographer who will talk to you about your treatment and what to expect and make sure you know the possible side effects of treatment. You can also ask the radiographer any questions you have. 

PBT_guide_for_patients_carers_11.PNG

The radiographers will take you into the treatment room and ask you to remove or loosen clothing that covers the area being treated. There are cubicles for changing and gowns available if needed. You will be helped onto the treatment couch. The radiographers will move you in to the correct position for treatment and make sure that you’re as comfortable as possible. If you have a mask or immobilisation device, this will be put in the same place as when you had the planning appointment. All you need to do is to stay as still as you can throughout the session. 

PBT_guide_for_patients_carers_12.PNG

Each session may take between 20 to 60 minutes to complete, depending on the area being treated. Most of this time is used to take X-ray images. These are done to make sure you are in the correct position and that the beam is directed to the correct area of your body. 

The radiographers will be with you right up until they are ready to deliver the treatment. Sometimes there is a delay before the treatment starts. The radiographers will talk to you while you wait and tell you when the treatment is about to start. There is nothing to see or feel when the machine is delivering the treatment. You may hear a buzzing noise. 

Having PBT does not hurt and it does not make you radioactive. You are safe to be with other people, including children and pregnant women, during and after your course of PBT. 

During your course PBT there may be occasions when the PBT machines are not available, and it is not possible to give you PBT. You may have to miss one or more sessions. Do not worry if this happens. Any gaps in treatment will be considered by your doctor and a plan made. 

The following options are possible, but will depend on your individual circumstances: 

  • If you are only having PBT you could miss treatment on the day(s) the machine is unavailable. 
  • You may have photon (radiotherapy) treatment instead. You would need a new treatment plan so you may not start the photon treatment straight away. 
  • You may be asked to have PBT on a weekend when the machine becomes available again. 
  • Please do not book public transport to return home immediately after you finish your course of PBT. If there are delays, your treatment may not finish on the day it’s planned to finish.

PBT side effects will vary depending on which part of your body is treated and the PBT dose. Some side effects will gradually appear during PBT, and some will appear months or years after PBT. Your doctor will tell you about these side effects during the assessment appointment. You will be given an information leaflet explaining the side effects you may get. There will be plenty of time to talk to your doctor about anything you want to discuss. 

Most people notice the side effects during the second half of their course of treatment. These will continue after you have finished treatment, but they should gradually get better four to six weeks after treatment finishes. You will be supported throughout treatment by the PBT review team.

During treatment you will be regularly reviewed by your clinical oncologist and key worker to see how you are managing the side effects. You will also be reviewed by the PBT review team, and other health care specialists. 

Please let the treatment radiographers or key worker know if you want to speak to one of the PBT review team.

You may require chemotherapy and supportive care during your proton beam therapy. You will be given detailed information about where your chemotherapy will be given and what facilities are available. At UCLH, chemotherapy is given in several different settings: 

  • In chemotherapy day-care, on the second floor of the UCLH Macmillan Cancer Centre. 
  • In ambulatory care, on the second floor of the UCLH Macmillan Cancer Centre. 
  • In the Teenage and Young Adult (TYA) Day-care, a young adult oncology unit providing outpatient treatment and supportive care to teenagers and young adults aged up to 24 years. The TYA unit is located on the third floor of the University College Hospital Macmillan Cancer Centre. 
  • As an inpatient on the adult oncology wards at UCLH. 

You can read further information on our pages listed below: 

If you have side effects or symptoms you are worried about, please follow the advice below: 

  • If you are at the UCLH PBT department during working hours, please call the PBT reception or your key worker. The reception phone number is: 020 3456 8000/8001
  • If you aren’t at UCH or it’s outside normal working hours, please call the UCLH Oncology Advice Line (available 24 hours a day for urgent support and specialist advice) on 07947 959 020
  • In the event of a medical emergency, go to UCLH emergency department, or call 999 and tell the ambulance crew to take you to UCLH emergency department. 
  • If your friend or relative feels unwell call 111. For urgent or emergency care call 999. 

Six to eight weeks after you have finished PBT you will have an appointment with a doctor to see how you are recovering and to decide if you need any further support or treatment. The appointment may be at UCLH or at your local referring hospital. 

The UCLH PBT team will tell you where you will be seen. At the end of treatment, a letter with details of your treatment, any side effects you are experiencing and supportive care you are receiving, will be sent to your GP, your referring consultant, and a copy sent to yourself. 

Attending follow-up appointments is very important as it allows us to look for problems that might arise from treatment. This helps us identify any problems early and direct any on-going care that you may need relating to any long-term treatment side-effects you may have. 

Also, this is an opportunity for us to gather a great amount of information that will help us improve the treatments we give to patients in the future. This allows us to continue to deliver high quality, safe and effective treatment. 

If follow-up has been arranged at UCLH, please make every effort to attend. If you wish to cancel your follow-up, please contact us first. If your follow-up has been arranged at your local referring hospital, please remind your doctor to send any letters and results to us. 

If you are worried about any treatment side effects or have any other questions, before you are seen in follow-up, please call the PBT reception, your keyworker at UCLH or your key worker/clinical team at your local referring hospital.

Some people may feel emotional, upset, anxious, or have difficulty adjusting to what is happening to them. If you are any of these emotions during your treatment, remember that you are not alone. There are people here who can help you. Try to let a member of the team know how you are feeling. They are here to support you and are never too busy to help. 

The radiographers and review team are always available to give you information and support throughout your course of radiotherapy. However, if you would like more time to discuss any aspect of your treatment or to talk about how you are feeling, the Macmillan Information and Support team are available to talk to you and your family. 

If you need to discuss feelings or personal issues in more depth you can be referred to the psychology team. They are trained to listen, and to help you explore and clarify your thoughts and feelings. 

All staff are here to make sure your treatment goes as smoothly as possible, and to support you and your family through this difficult period.

PBT_guide_for_patients_carers_13.PNG

The Macmillan Support and Information Service is based on the ground floor of the UCLH Macmillan Cancer Centre on Huntley Street. It provides a relaxed and informal space where you and your family and friends can ask questions and talk through your concerns with specialist staff. 

Visitors can access a range of information resources, including leaflets and booklets. There is also a program of supportive activities to help you to manage treatment side effects and meet other people who have shared similar experiences. 

You don’t need an appointment to visit the Macmillan Support and Information Service. 

Address: University College Hospital Macmillan Cancer Centre, Ground Floor, Huntley Street, London WC1E 6AG 

020 3447 8663 

uclh.supportandinformation@nhs.net

The Macmillan living room is a space within the PBT department for people having PBT and their carers. Whatever it is you feel you need to talk about, from coping with your emotions, to advice about talking to children or those close to you, we are here to help. You are welcome to come in and have a cup of tea while you wait for your appointment or gather your thoughts before going home. 

We have a range of leaflets and booklets about cancer types, tests and treatments, living with and beyond cancer, work and finances, and many other topics. If we don’t have what you need, we will show you where you can find it. 

We offer practical support to you and those who support you about financial concerns and work. If we can’t help, we can direct you to welfare and benefits advice, or your local services. Patients can also be referred onto appropriate services such as complementary therapy, the wig service, dietitian, welfare and benefits advisers and the psychological and emotional care team. 

PBT_guide_for_patients_carers_14.PNG

The PBT department is in the University College Hospital Grafton Way Building.

PBT_guide_for_patients_carers_15.PNG

The department is located on Basement 3 (B3) and Basement (4). The address is: 

University College Hospital Grafton Way Building 

1 Grafton Way 

London 

WC1E 6AS 

The PBT department is easily accessible by road, tube and rail. For help planning your journey please visit our website

Adrenal_location_map.jpg

Patient travel expenses

Travel expenses can be reimbursed for patients who qualify under the NHS Hospital Travel Cost Scheme. Under the scheme, patients on a low income or receiving specific benefits may be eligible to receive financial help towards their travel costs from home to UCLH or from the accommodation to UCLH, if they are living away from home. Please ask the reception staff for an attendance form and take this to the main UCLH hospital cashiers office. You will need to bring proof of your benefit, proof of your travel costs and proof of your appointment.

Hospital Transport

We only provide hospital transport between the proton beam therapy department and the accommodation, or your home address if you live in the catchment area, if there is a medical reason for you to have it. If you feel you need hospital transport, please call the PBT Team on 020 345 68240 who will be able to conduct an assessment over the phone. Please note that it is the responsibility of your referring centre, if you live outside the catchment area, to arrange transport, if required, from your home address to the accommodation. 

Car parking

There is no allocated car parking, except for patients with Blue Badges who are attending UCH. The nearest paid parking is a 10-minute walk from UCH. For further details please visit: 

For information on other parking options in the surrounding area please visit: 

Parking dispensation scheme

Areas in Camden, south of Euston Road, are not covered by the national Blue Badge disabled parking scheme. If you want to park near, or in, UCLH disabled parking bays you will need to apply for a parking dispensation to use with your Blue Badge. 

If you have a question about disabled parking or would like to apply for a parking dispensation in advance, please call PBT reception on 020 3456 8000/8001, or email your query to uclh.disabledparking@nhs.net or telephone 020 3447 9922

If you are eligible, accommodation will be provided for you when you have your assessment visit and for your course of PBT. You can have one adult carer to stay with you if you are an adult. You will be sent detailed information about the accommodation. Your accommodation will be: 

STAY Camden 

1 Water Lane 

London 

NW1 8NZ  

Prescriptions and medications

Please bring your current medication and enough medication for your assessment and treatment stay for yourself and any accompanying friends/family (for all pre-existing conditions). Prescriptions for medication made by the UCLH doctors during your treatment can only be collected from the UCLH pharmacy. Any prescriptions relating to your cancer will be free of charge. Please speak to your key worker for more information. 

If you have been provided with a physical copy of this page, please fill in your Keyworker's details below.

My Keyworker is:

They can be contacted on:

Proton Beam Therapy Reception 

020 3456 8000/8001 

Proton Beam Therapy Bookings Team 

020 3456 8240 

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

020 3456 8000/8001 

Proton Beam Therapy Macmillan Support Workers 

07977 674 956 

uclh.pbtinformationandsupport@nhs.net 

Out of hours oncology advice number (available 24 hours) 

07947 959 020 

TYA Ambulatory Care (Monday to Friday, 8am to 6.30pm) 

020 3447 1837 

TYA Ambulatory Care 24-hour line 

020 3456 7111

Patient Advice and Liaison service (PALS)

PALS is a patient-friendly, easy-to-access service designed to provide a personal contact point to assist patients, relatives and carers. If you have a problem that you have been unable to resolve, PALS can help you. 

The University College Hospital PALS office is located on the ground floor of UCH and is open from 09:00 to 16:00, Monday to Friday. 

020 3447 3042 

uclh.pals@nhs.net 

Further Information

Maggie’s (Providing cancer information and support in centres across the UK and online)  

Young Lives vs Cancer (formerly CLIC Sargent) 

0300 330 0803  

Shine Cancer Support (cancer support for adults in their 20s, 30s and 40s) 

07804 479 413 

hi@shinecancersupport.org  

Trekstock (for young adults in their 20s and 30s with cancer) 

020 4541 7601 

hello@trekstock.com  

OUTpatients (cancer support for LGBTIQ+ community)  

Life After Cancer  

Macmillan Cancer Support  

0808 808 0000  

cancerline@macmillan.org.uk   

Cancer Research UK  

0808 800 4040    

Carers UK  

0808 808 7777  

adviceline@carersuk.org   

NHS Choices   

UCLH cannot accept responsibility for information provided by other organisations.

Visit London  

Transport For London  

National Rail Enquiries  

UCLH cannot accept responsibility for information provided by other organisations. 


Page last updated: 18 September 2024

Review due: 01 July 2025