Patient guide

Bring these with you

• Your pathology (biopsy) report
• Reports and the images themselves, on a disc or as a link: CT, MRI, PET
• The surgical report, if you have had surgery
• Details of earlier treatment: medicine names and dates, and for radiotherapy the area and number of sessions
• Recent blood tests
• A list of all your medicines, including supplements and herbal products
• Your insurance booklet and card

What happens at the visit?

The doctor asks about your history, examines you, looks at the images and talks about treatment options. A final decision may not be made that day, and more tests may be needed.

Bring someone with you. A lot is said at this visit, and two people remember better than one.

Write down these questions

• What is the aim of my treatment?
• What treatment is suggested, and in what order?
• How many sessions and weeks will it take? Where is it given?
• What side effects are likely during and after treatment?
• Can I work, drive or travel during this time?
• Who do I call outside office hours?
• If I am pregnant or planning children, how does this treatment affect that?

Be sure to raise the last question before treatment begins.

Why is this session needed?

The radiation has to reach the same place every time. So before treatment, a CT shows the location and size of the tumour. The doctor sets the treatment area and a computer works out the dose and beam paths. No treatment radiation is given in this session.

What happens?

1. You lie on a table and the therapist places you in a comfortable position that can be repeated.
2. A plastic mould is sometimes made to keep you still.
3. For the head and neck, a mask with air holes is made that attaches to the table.
4. Images are taken. You stay still and breathe normally.
5. Dots are placed on your skin or on the mask.

The dots on your skin

These are the size of a freckle, and the therapist uses them to position you each time. Tattooed dots are permanent and ink dots fade over time. Do not remove them, and tell the therapist if they fade.

After this session

Planning takes time. Ask the treatment centre for your start date. If you are afraid of the mask or of closed spaces, say so on the first day.

The weekly schedule

Most patients are treated once a day on working days, as outpatients. Some schedules differ: a few sessions a week, or more than one session a day. Focused treatments have far fewer sessions.

Step by step

1. You may need to change into a gown. The treatment room is cool.
2. You lie on the table and the therapist positions you using your skin dots, mould or mask. The coloured lights on your skin are harmless.
3. The therapist leaves the room but watches you through a window or screen and talks to you over a speaker.
4. The machine moves around you. You hear it moving, but you cannot see or feel the radiation.
5. Breathe normally and stay still.

The radiation lasts about 1 to 5 minutes. A whole session usually takes 30 to 60 minutes.

If there is a problem

If you feel unwell or uncomfortable, say so. The therapist can stop the machine at any moment.

Practical points

• Wear loose, soft clothing.
• Tell the team about side effects during treatment, and do not wait for the next visit.
• If you cannot make a session, tell the treatment centre early.
• If you live far away, start arranging your travel early.

Before you read

This list is complete, and that should not frighten you. Two people with the same dose to the same area can feel different. Ask your doctor which items are more likely for you. Tiredness, skin changes and hair loss in the treated area are possible in every area.

Brain

Headache, nausea, tiredness, hair loss, dizziness, and trouble with memory or speech. Most of these come from swelling of the brain, and there is medicine for it, so report headaches. Late effects can also appear months or years later.

Head and neck

Mouth and throat sores, dry mouth, trouble swallowing, taste changes, earache, tooth decay, jaw stiffness and thyroid problems. See a dentist before treatment starts, because the risk of decay rises, and a bad tooth is easier to remove before treatment.

Breast

Skin irritation, soreness and swelling, which usually settle within one to two months. The skin may darken, and the breast may change in firmness or size.

Chest

Sore throat, trouble swallowing, heartburn, cough and breathlessness. Lung inflammation can also appear three to six months later. Report a new cough or breathlessness, even after treatment has ended.

Abdomen

Nausea, vomiting, heartburn, cramps, diarrhoea or constipation. Small, frequent meals help. Check with your care team before using over-the-counter medicines or home remedies.

Pelvis and rectum

Constipation or diarrhoea, rectal irritation, blood in the stool, painful urination and blood in the urine. In the long term, bladder or bowel control may change. Fertility and sexual life can also be affected, and women may have early menopause symptoms. Pregnancy should be avoided during treatment. Talk to your doctor about fertility before you start.

Skin in the treated area

• Wear loose, soft, smooth clothing.
• Wash with lukewarm water and mild soap. Let the water run over the skin without rubbing. Do not wash off your marks.
• Cover the skin from the sun, even after treatment ends.
• Ask your care team before using any cream, ointment, perfume, deodorant, powder or oil. These can irritate the skin and may affect the radiation reaching the body.
• Do not put heating pads, ice packs or very hot water on this area.
• Do not use tape or scratch. Ask before shaving this area.

Mouth, if the head and neck are treated

• Avoid spicy, rough, very hot or very cold food.
• Sip cool drinks and make food soft and moist.
• Brush gently with a soft brush and fluoride toothpaste.
• Avoid tobacco and alcohol.
• If dentures cause sores, set them aside and tell your care team.

Food

Several small meals are easier for many people than three large ones. Drink enough fluids. If you are losing weight or cannot eat, say so early. A dietitian can help. Do not start supplements or herbal products without asking.

Tiredness

Tiredness is common and does not always go away completely, but it can be managed.

• Light activity such as walking helps energy. Ask your care team for a plan.
• Save important tasks for the hours you feel best.
• Keep daytime naps short so night sleep is not disturbed.
• If rest does not help, or you cannot do your usual activities, say so. Anaemia and infection should be checked.

If you are a companion

Go to visits with them, write down questions and keep the medicines in one list. Read the warning signs too.

First of all

When treatment starts, ask your care team when to call, when to go to the emergency room, and what number to use outside office hours. Their answer comes before this list.

Call 115 or go to the emergency room now

• Severe breathlessness
• Chest pain
• Heavy bleeding that will not stop
• Fainting, sudden confusion or reduced alertness
• A severe reaction during or soon after an injection: facial swelling, trouble breathing or widespread hives

Do not drive yourself, and take your medicine list. Tell the staff you are being treated for cancer.

Call your care team the same day

A fever of 38°C or higher. Call before taking paracetamol, aspirin or ibuprofen, because they may hide an important sign. If no one answers, go to the emergency room.

Other signs of infection:

• Chills
• Cough or sore throat
• Diarrhoea
• Earache, headache, sinus pain or a stiff neck
• A skin rash
• Sores or a white coating in the mouth
• Swelling or redness, especially where a catheter enters the body
• Bloody or cloudy urine, or pain when urinating

If you are having or have had immunotherapy

Report diarrhoea, a new cough or breathlessness early, even if treatment ended months ago. These effects can appear at any time during or after treatment.

Do not hold back

Calling about a worry is never too much. Noting the date, your temperature and your symptoms helps your care team.