Series No. 44 - Radiotherapy for craniopharyngiomas and pituitary adenomas

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 of 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 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.

All individuals with internal reproductive organs (a uterus) of child-bearing ability (12-55 years old) will need to sign a form to confirm there is no possibility that you could be pregnant. You must tell the staff immediately if there is any chance of you being pregnant at any time during your treatment. Individuals should not become pregnant for at least four months after radiotherapy treatment.

Individuals with external reproductive organs (testes) 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 about this please talk to your clinical oncologist, your 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 will also meet the neuro-oncology specialist radiographer.
2. You will be consented for radiotherapy or proton beam therapy.
3. Radiotherapy/ Proton Beam Treatment planning appointment - You will have a mask made and a planning CT using intravenous contrast dye if required. Some patients may also require an MRI scan.
4. First treatment - You will start treatment about 2-3 weeks after the planning scan. Each appointment will take approximately 20-45 minutes.
5. Review clinics - You will be reviewed once a week during treatment by the neuro-oncology specialist radiographer and/or clinical fellows. All review clinics are in the radiotherapy and proton beam therapy department and are timed with your treatment.
6. Treatment complete - You will have a telephone consultation with the neuro-oncology specialist radiographer 2-4 weeks after radiotherapy has ended. You will be reviewed by your clinical oncologist, as an outpatient, four to six 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 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.

UCLH 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.

In general, patients with a craniopharyngioma or a pituitary adenoma are referred for radiotherapy treatment if:

• They have evidence of persisting tumour following surgery
• Their tumour is secreting a hormone that continues to be raised in blood tests following surgery, despite treatment with drugs.
• Their tumour re-grows (this would be some time after surgery, perhaps following a second operation).

Before beginning radiotherapy or proton beam therapy, your treatment must be carefully planned. To ensure your treatment is accurate, you will have a personalised immobilisation mask made of your head and neck. You will wear the mask each day during your treatment. The mask has three purposes:

• To help you keep still during your treatment
• To ensure you are in the same position each day for treatment
• To prevent having to draw treatment marks on you, as they are drawn on the mask.

To make the mask, a thermo-plastic material is used which is hard when dry and is heated to allow it to soften. This is placed over your head and shoulders and held in position, for twelve minutes, until it begins to harden. After your mask is made you will have a radiotherapy CT planning 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. The radiographers are there to explain the procedure and to answer any questions you may have. You will be asked to change into a hospital gown and remove all clothing down to your waist. The radiographers will ask you to lie on the CT couch.

You will be positioned on the CT couch lying on your back wearing your mask. The radiographers will mark lines on your mask. These will be used to ensure you are in the correct position each day for your treatment. The scan will take approximately 5- 10 minutes.

You may have some dye (also called contrast agent) injected in to your arm via a temporary cannula. The dye makes the images clearer for planning your treatment. If you need this, the radiographers will explain what is happening before and during the process. If you are having proton beam therapy, you will also have an MRI scan whilst wearing your mask. If you need an MRI, this will be detailed in your appointment letter. The MRI scan process is very similar to the CT scan but takes a little longer. The radiographers will talk you through the process, so you know what to expect. You will feel nothing in either scan. 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 radiotherapy treatment.

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.

For each treatment session, you will be lying on your back, on the treatment couch, wearing your immobilisation mask. The radiographers will ensure you are in the correct treatment position by aligning the marks on the mask with laser lights. They will then move the treatment machine and couch into position using your personal treatment plan.

When final verbal checks have been made, the radiographers leave the room. To give you the best treatment, you will be treated from several different angles. The treatment 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. The radiographers will be watching you at all times on a closed-circuit television. Please speak with your radiographers if you have any questions or concerns.

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

There will be some side effects which will gradually appear during your course of treatment. These effects will vary from patient to patient. There are side effects occurring during treatment, some happening soon after treatment, and some appearing months or years after radiotherapy.

The risk and severity of side effects occurring will depend on the dose of radiotherapy or proton beam therapy given and the exact area which receives treatment. 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. The main side effects that occur during treatment are:

Skin changes

The skin in the area being treated will gradually change colour. Your skin will 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 can be itchy. Some patients may get peeling of the skin behind the ear which can be sore.

Radiotherapy skin reactions cannot be prevented, but to keep any skin in the treatment area healthy that is not covered by your hair we advise you to continue using whatever moisturiser you prefer. 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 moisturiser starts to irritate your skin or your skin peels and is sore, stop using the moisturiser and let your team know. They will refer you to the radiotherapy review team for appropriate skin care. 

If you do not currently use a moisturiser, then speak with your radiotherapy team and they will be able to suggest some options for you. We recommend that you patch test any new moisturising product you are using on an area of your body that is not the treatment area, to ensure you do not have a reaction.

Avoid exposing the skin in the treatment area to strong sunlight or extreme temperature changes during treatment. Always ensure you wear a hat/cap to protect your head if you are outside during strong sunlight. After treatment has finished, we would always recommend that you use a high protection sun cream (Factor 50 or more) and wear a hat/cap in strong sunlight.

Hair loss

Radiotherapy will cause hair loss in the treatment area. Hair loss usually occurs after two to three weeks of treatment. The hair usually starts to grow back about three months after treatment. However, hair might not grow back, or be “patchy” in the areas which have had a high dose of radiation. The doctors will advise you about this.

Losing hair can be very distressing for patients and their families. If you are concerned, please speak to us or your specialist nurse, and we can discuss the options available. During treatment we advise that you wash normally using warm water and the soap products you would normally use. Gently pat the skin dry with a soft towel. When washing your hair, use warm water and a non-medicated shampoo. Dry your hair using a soft towel, a hair dryer on a cool setting or leave to dry naturally. Brush and comb your hair gently using a soft brush or a wide rounded-toothed comb.

Feeling sick (nausea)

Sickness is unusual during this treatment, although occasionally, some patients may feel sick and vomit due to swelling. If you do feel sick, please tell us. This can be well controlled with anti-sickness medication which will be prescribed if you experience such symptoms.

Headaches

Treatment may cause the brain to swell slightly and so you may develop signs and symptoms of raised pressure, which can include headaches. This is usually for a short period of time, but it is important to discuss these reactions with your doctor or specialist nurse so the right treatment and support can be given. A course of steroids may be prescribed, depending on your symptoms. If you have a VP shunt (a tube draining fluid from the brain to the heart or gut) and are experiencing headaches, it is important to seek advice from your doctor or specialist nurse. It may be an indication of a blocked shunt.

Hearing problems

You may experience temporary hearing difficulties. There may be swelling in the inner ear due to the radiotherapy which can cause fluid to accumulate in the ear. You may also experience a hardening of the wax in your ears if your ears are in, or near, the area being treated. Please speak to your specialist nurse if you are anxious about this.

Tiredness (fatigue)

Tiredness is a very common side effect of treatment. You may feel more tired and have less energy than usual, 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 cancer or a tumour and continuing with normal life. The tiredness is usually at its worst near the end of treatment and for several weeks afterwards.

We recommend that you listen to your body. Do as much as you feel you can and rest when you need to. However, gentle exercise has been found to improve fatigue levels in patients and we would recommend walking as a good form of exercise. Please let someone know if you are finding things difficult, as you can be referred to physiotherapy and occupational therapy for practical tips and advice.

There might be a particularly sleepy spell starting four to six weeks after treatment ends and going on for two to six weeks or even longer. This is called somnolence syndrome and has been described as excessive sleepiness, drowsiness, and lethargy. You may feel that you have a lack of energy and cannot be bothered to do anything. Please contact your specialist radiographer, nurse, or clinical team if you are experiencing excessive tiredness.

At your first treatment appointment the radiographers will discuss the treatment with you and talk about any 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 clinical nurse specialist or specialist radiographer who will monitor your side effects and review your progress.

Late side effects incurred during treatment can appear to develop many months or years after radiotherapy has finished. They are the hardest to accurately predict and, unfortunately, when they do occur, they are usually permanent. Your doctor will discuss the possibility of these late side effects with you, at the time you sign your treatment consent form.

Possible late side effects may include:

Hormone imbalance

If your pituitary gland was in, or near, the treatment area you may experience changes in your normal hormone levels. This is called pituitary-hypothalamic dysfunction and can lead to problems with your thyroid, sugar metabolism, fertility, or ability to process water. You will be regularly monitored by the neurology and radiotherapy doctors and your specialist nurse when you attend for follow-up appointments. If you are experiencing any problems or have any worries, please do not hesitate to ask for help.

Cognitive (memory and thinking) problems

In a very small proportion of patients, you may experience such problems due to changes in the brain caused by long term radiotherapy effects. The small blood vessels in the brain can be affected by the radiotherapy many years after treatment. Effect on the small blood vessels is similar to the changes that occur within the brain as it ages. Symptoms can be mild, moderate or severe, depending upon the area of brain affected and the extent of the damage to normal brain cells. You may experience: 

• Problems thinking clearly
• Difficulty with managing tasks you previously found easy
• Poor memory
• Confusion
• Personality changes

If you are experiencing such symptoms, please tell your medical team. You can be referred to the neuropsychology team who will assess you and suggest helpful strategies to help manage any memory problems you may be experiencing.

Cavernomas

Following radiotherapy to the brain, some patients may develop a small benign abnormality. These abnormal areas in the brain are due to a small tangle of blood vessels and are called cavernous haemangiomas, or cavernomas for short. In most cases, they cause no problems, but are detected on a routine follow-up MRI scan.

Very occasionally, cavernomas may be discovered on a scan performed to investigate symptoms which might be due to tumour recurrence, but in fact have been caused by the small abnormal blood vessels bleeding. Cavernomas may appear some months or many years after radiotherapy, typically after about three years. The risk of developing a troublesome cavernoma is very low, only about one per cent.

Cataracts

The development of mistiness of the lenses of the eye can occur because of unavoidable radiation to the eye. This usually develops five to six years after treatment. In many cases this will not have an effect on your vision. However, in a small number of cases, some people may require surgery to remove the cataract in later years. Fortunately cataract surgery today is very straightforward and successful.

Strokes

Patients who have radiotherapy to the brain have a slightly higher risk (less than five per cent) than the general population of having a stroke. If you have any worries about this, please discuss it with your doctor.

Radiation necrosis

There is a very small chance radiation may cause permanent damage to a portion of the brain tissue or brainstem, which can occur several months to several years after radiotherapy. This can result in severe and permanent neurological deficits such as paralysis, weakness, seizures, memory loss, coma or death. Surgery may be necessary to remove the damaged area. Although this condition is very rare, it can be fatal.

Second malignancy

Very rarely, people who have received treatment for one particular tumour may develop another type of tumour in the treated area some years later. The radiotherapy doctors will discuss this risk if it is relevant to you.

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 specialist nurse, specialist radiographer, the Macmillan information and support team, the treatment radiographers and the radiotherapy review team. 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.

All the 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.

After you have finished treatment, you will be given a follow-up appointment for four to six weeks’ time. This will either be University College Hospital, Queen’s Square, or your referring hospital. You will have a baseline post-radiotherapy MRI scan six to eight weeks after your radiotherapy has ended. This scan will not show how effective the treatment has been, but it will be used to compare with any future scans you may have.

The side effects you may have experienced will continue after treatment has finished. It is common to experience a worsening of the skin reactions for about 10-14 days after radiotherapy. If you are worried about your skin or any other side effects after your radiotherapy treatment, please call the radiotherapy review team for advice. Please see the contact numbers at the back of this leaflet. If you have questions about your treatment, follow-up appointments or medications, please speak to your clinical team.

Your Clinical Nurse Specialist (Key worker) via the Brain Tumour Office at The National Hospital for Neurology and Neurosurgery

Name of Clinical Nurse Specialist:
t: 020 3448 8830

For general enquiries contact The Brain Tumour Unit
t: 020 3448 8830
e: uclh.braintumourunit@nhs.net

Radiotherapy Neuro-oncology Specialist Radiographer
t: 07971 034105

Proton Beam Therapy Reception
t: 020 3456 8000/8001

Radiotherapy 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 3700/3701

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

Out of hours oncology advice number (available 24 hours)
m: 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
e: uclh.pals@nhs.net

The Pituitary Foundation
t: 0117 370 1320
e: helpline@pituitary.org.uk
w: www.pituitary.org.uk

The Brain Tumour Charity
t: 0808 800 0004
w: www.thebraintumourcharity.org

Brains Trust
t: 01983 292 405
e: hello@brainstrust.org.uk
w: www.brainstrust.org.uk

Brain Tumour Support
t: 01454 422701
w: www.braintumoursupport.co.uk

Brain and Spine Foundation
t: 0808 808 1000
w: www.brainandspine.org.uk

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

Teenage Cancer Trust
t: 020 7612 0370
e: hello@teenagecancertrust.org
w: www.teenagecancertrust.org

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

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.