Patient guide

What does the first visit feel like?

It is normal to feel anxious before your first visit. At this appointment, the doctor gets a full picture of your illness, looks over your records, examines you, and explains your treatment options. Treatment does not always start at this visit; the doctor may ask for more tests or imaging first.

The more complete your records are, the faster and more accurately the doctor can give an opinion.

What to bring

Get this list ready before the visit:

• Pathology report. The results sheet from your biopsy or surgical sample. If extra tests were done (such as hormone receptors or genetic testing), bring those too.
• Imaging. A CD or files of the images (CT scan, MRI, PET scan, mammogram, ultrasound) and the radiologist’s written report. The report alone is not enough without the images themselves.
• Surgery records. A summary of your hospital stay or the operative report.
• Chemotherapy or other treatment records. The name of the treatment, the dates, the number of sessions, and the discharge summary.
• Recent tests. Blood tests and any other tests.
• Medication list. Everything you take, including over-the-counter medicines, vitamins, supplements, and herbal remedies. It is best to bring the boxes or photos of the packages.
• Other medical conditions and allergies. For example diabetes, high blood pressure, heart disease or autoimmune disease, and any drug allergies.
• National ID card and insurance booklet (or supplemental insurance card) to open your file.

Tip: Put your records in a folder in date order. Take a photo or scan of each one too.

Bringing a companion

If you can, bring someone you trust. There is a lot of medical information in one visit, and two people hear more than one. A companion can:

• Take notes
• Ask questions you forgot
• Help with decisions and getting to appointments

If you like, you can record the visit with the doctor’s permission.

Questions you can ask

Write your questions down before the visit. Here are a few examples:

• What type and stage of illness do I have?
• What treatment do you suggest, and what is its goal?
• How many sessions will I need, and over how long?
• What side effects are possible, and what should I do about them?
• Can I work or drive during treatment?
• When should I call you?

If you did not understand something, ask again. You have the right to ask for a simple explanation.

On the day of the visit and afterward

• Arrive a little early so that check-in and setting up your file are not rushed.
• Wear comfortable clothes without many zippers or buttons so the exam is easier.
• Take your regular medicines as usual, unless your doctor or the treatment center has told you otherwise.
• At the end of the visit, ask what the next step is: tests, imaging, a simulation session, or another visit? And most important, ask which number to call if a problem comes up.
• Go over your notes the same day and write down what you understood.

Every patient’s treatment plan is different; ask your doctor about your own situation.

What is simulation?

Simulation is a preparation session before radiation therapy begins. In this session, a special CT scan is done to show the exact location of the tumor and the organs around it. These images are the basis for planning your treatment.

No radiation treatment is given in this session. It is only imaging and preparation.

What is the session like?

• The CT machine looks like a regular one. You lie on a table, and the table moves through a ring.
• The technologist places you in the same position you will be in for your treatment sessions. Pillows, supports, or a special mold may be used.
• Sometimes contrast material (an injected or oral dye) is given to make the images clearer. If you are allergic to contrast material or iodine, or have kidney problems, be sure to say so before the session.
• How long the session takes depends on the type of treatment. Most of the time is spent positioning your body exactly, and the scan itself is short.
• After that, marks are made on your skin. Depending on the center, this is done with a special marker or with very small permanent dots, known as tattoos. If you are worried about the marks staying, ask.

The radiation mask

For head and neck treatment, and sometimes other areas, a custom mask is made. The mask is a sheet of plastic mesh that softens when warmed, is shaped over your head and face, and hardens as it cools. Its job is to hold your head and neck in exactly the same position at every session.

• Making the mask usually takes a few minutes.
• The mask is placed over your face. It is warm and soft, and you feel gentle pressure. It has tiny holes, and you can breathe through them.
• You do not need to hold your breath; you can breathe normally.
• The mask is not painful and does not harm your skin.

If you are afraid of closed spaces

Some people feel smothered or anxious in the mask. This feeling is common, and there are ways to deal with it:

• Tell the technologist and the doctor before you start.
• You can ask the treatment team to show you the mask once before it is made.
• Relaxation techniques, such as slow, deep breaths or listening to music, can help.
• Talk to your doctor about medicine to reduce anxiety; do not take any medicine on your own.
• During the session there is a way to let the team know, such as raising your hand. The team can see and hear you through a camera.

Practical tips

• Wear comfortable clothes. You may need to take off jewelry, glasses, or hair clips, so it is best to bring fewer of these.
• Ask the treatment center if you need any special preparation for the session, for example about hair or a beard for head and neck treatment.
• Do not wash off or scrub the marks on your skin. If they fade, tell the technologist.

After simulation, it usually takes a few days to finish planning your treatment. After that, you will be told the date of your first treatment session.

Every patient’s treatment plan is different; ask your doctor about your own situation.

What happens to the skin?

Radiation therapy targets only the treatment area, but the skin along the path of the beam also receives some radiation. After a few sessions, the skin in that area usually changes. The common changes are like a sunburn:

• Redness and warmth of the skin
• Dryness, itching, or peeling
• Darkening of the skin color
• In some people, blisters or sores

How strong these changes are differs from person to person. After treatment ends, the skin slowly gets better, but it may stay darker or more sensitive for a while. Your treatment team will be with you through this time.

What you can do

• Wash gently. Use lukewarm water and a mild, fragrance-free soap. Take short showers.
• Dry carefully. Use a soft towel and pat slowly; do not rub.
• Keep the skin moisturized. Use only a cream or lotion that your nurse or doctor has approved. The best time is usually after a bath, while the skin is still a little damp. Ask whether to apply cream before your treatment session.
• Wear soft, loose clothing. Cotton is best. Do not wear a bra or tight clothes that press on the treated area.
• Stay out of the sun. Cover the treated area with clothing. Wear a wide-brimmed hat and sunscreen (with your treatment team’s approval).
• Keep your nails short and do not scratch your skin.
• If the treated area is the neck or face, shave with an electric razor, or do not shave for now.
• Do not wash off the marks on your skin. If they fade, tell the technologist.

What not to put on your skin or do

• Products with alcohol or fragrance on the treated area
• Powder, deodorant, or antiperspirant in the treated area, unless your treatment team has allowed it (this matters in breast and underarm radiation therapy)
• Hot water bottles, ice packs, or adhesive bandages on the treated area
• Very hot baths, saunas, and chlorinated pools
• Rubbing, scraping, scrubbing, or using creams you like or make at home that have not been approved

Before you put any product on your skin, even a natural or herbal one, ask your treatment team first.

When to tell your treatment team

Telling them early helps keep your skin from getting worse. Let them know the same day, or before your next session, if you have:

• Blisters, an open sore, or wet drainage
• Severe burning or pain that keeps you from sleeping or doing your activities
• Redness that is spreading quickly
• Signs of infection: pus, a bad smell, intense warmth, or a fever of 38°C (100.4°F) or higher

If you have a fever or severe pain, do not wait for your next visit; call the same day.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Why does nutrition matter?

Cancer treatment uses up your body’s energy. If you do not eat enough, weakness and tiredness increase and you lose weight. During this time, an ordinary “healthy” diet is not always enough; you may need more protein and calories.

Everyone’s needs are different. It is a good idea to ask your doctor to refer you to a dietitian who can write a plan that suits you. Do not start a special diet or cut out food groups without their advice.

General tips

• Small, frequent meals. Instead of three big meals, eat five or six small ones.
• Eat protein first. Examples are meat, chicken, fish, eggs, dairy, beans and lentils, and nuts.
• Eat your biggest meal when your appetite is best. For most people, that is in the morning.
• Keep prepared food within reach. Before treatment, put a few homemade meals in the freezer, and ask the people around you to help with shopping and cooking.
• Nutritious drinks. On days when your appetite is low, smoothies, milk with fruit, soup, and juice can stand in for solid food.
• Drink most of your fluids between meals, not with food, so you do not fill up too fast. Drink enough water through the day.

Common problems

Nausea. Anti-nausea medicines usually work best if you take them before symptoms start. Talk with your doctor about them. Dry, plain foods that are cold or lukewarm are usually easier to tolerate.

Changes in taste and smell. If food tastes salty or metallic, use spices and fragrant herbs instead of salt, and swap red meat for chicken, dairy, or beans and lentils. Plastic or wooden spoons can help reduce a metallic taste. If the smell of food bothers you, eat it cold or lukewarm and stay out of the kitchen.

Mouth sores and dry mouth. Eat soft, moist, finely chopped food that is cold or at room temperature. Avoid sour, spicy, salty, hard, and hot foods, as well as alcohol and cigarettes. Ice chips are soothing. Rinsing your mouth with a salt and baking soda solution, as your treatment team advises, may help. See your dentist before head and neck radiation therapy begins.

Diarrhea. Drink more fluids, and tell your treatment team if it continues.

Constipation. Fluids, fruit, vegetables, and light activity help. Ask your doctor before using any laxative.

Food safety

Chemotherapy and some other treatments weaken the body’s defenses. To lower the risk of food poisoning:

• Wash your hands, dishes, and cutting board
• Cook meat, chicken, fish, and eggs all the way through
• Wash raw fruits and vegetables well
• Put leftovers in the refrigerator quickly

Supplements and special diets

Oral supplements (powders or ready-made shakes) are an option for people who have no appetite or have lost weight, but talk with your treatment team before you start. Vitamins, herbal remedies, and over-the-counter supplements may interfere with treatment. For this reason, being natural does not mean being safe.

No diet or supplement can cure cancer on its own. Stay away from claims that say “this food destroys cancer.”

Every patient’s treatment plan is different; ask your doctor about your own situation.

First of all

This list is to help you know what may happen, not to predict it. Not every patient has all of these side effects. How strong they are depends on the dose, the number of sessions, whether you are also having chemotherapy, and your own situation. Your doctor knows best what is likely in your case.

These side effects usually start a few weeks after treatment begins, and most of them slowly get better after treatment ends. Tiredness and skin changes can happen in every area.

Head and neck

The most common ones:

• Sores and pain in the mouth and throat
• Dry mouth
• Trouble swallowing and changes in taste
• A higher chance of tooth decay
• Dryness or tightness of the skin and jaw
• Tiredness

What you can do: See a dentist before treatment, and rinse your mouth regularly with water and a mild solution. Brush with a soft toothbrush, sip water, eat soft, moist food, and stop smoking and drinking alcohol. If swallowing becomes hard or you lose weight, tell your team early.

Chest and breast

• Breast: Redness, dryness, tenderness, and sometimes swelling of the skin. It usually gets better within one to two months after treatment.
• Chest: Burning or trouble when swallowing, heartburn, cough, and sometimes shortness of breath.
• Lung: In some patients, inflammation of the lung (pneumonitis) happens a few months after treatment. The signs are new shortness of breath, cough, chest pain, and a mild fever. Take these symptoms seriously, even months after treatment.
• Heart and arm (rare): Some treatments may affect the heart or the nerves of the arm. Your doctor will plan any checks that are needed. Also tell your treatment team about arm swelling (lymphedema).

What you can do: Wear soft, loose clothing, take care of your skin as described in the skin care guide, and drink enough fluids. Do not wear clothing that presses on the treated area.

Abdomen and pelvis

• Nausea, vomiting, belly pain, and stomach burning
• Diarrhea or constipation
• Needing to urinate often, burning when you urinate, and sometimes blood in the urine
• Irritation of the skin around the anus
• Later (in some patients): changes in bowel or bladder habits

What you can do: Drink plenty of fluids and eat small meals. For diarrhea, nausea, or painful urination, talk with your treatment team the same day, and do not take medicine on your own. Be sure to report any blood in your stool or urine.

Brain

The most common ones:

• Headache
• Nausea and sometimes vomiting
• Tiredness and drowsiness
• Dizziness
• Hair loss in the same area
• Trouble with memory or concentration
• Redness of the scalp

Some symptoms are caused by temporary swelling of the brain, and your doctor may prescribe medicine for it. A seizure, sudden weakness on one side of the body, trouble speaking, or a headache that gets worse must be reported right away to your treatment team or the emergency room. Late side effects may appear months or years later, and your doctor watches for them with regular follow-up.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Before anything else

This list is to help you know what to watch for and does not replace the guidance of your treatment team. At the start of treatment, ask your doctor or nurse:

• For which symptoms is a phone call enough?
• For which symptoms should I go straight to the emergency room?
• What is the phone number during office hours and after hours?

Keep the numbers on your phone and on a piece of paper next to your records. If you are worried, call; you are not a bother.

Go to the emergency room right away or call 115 (Iran’s emergency number)

• Severe shortness of breath, or your breathing is getting worse
• Chest pain, or a very fast, irregular heartbeat
• Heavy bleeding that will not stop, vomiting blood, or black stool
• Fainting, sudden confusion, or loss of alertness
• A seizure
• Sudden weakness on one side of the body, a drooping face, or trouble speaking
• Fever with severe shaking chills, or feeling extremely unwell, especially during chemotherapy

Call your treatment team immediately

Fever and infection. During chemotherapy, a fever of 38°C (100.4°F) or higher may be a sign of infection, and an infection during this time can be serious. If you have a fever, do not wait; call your treatment team right away. Check with them before taking a fever-reducing medicine, because it can hide a fever. Cough, sore throat, chills, burning when you urinate, or redness and swelling at a catheter site are also signs of infection.

Vomiting and diarrhea. Vomiting that keeps going and does not let you keep down fluids or medicine, or severe diarrhea that lasts. Signs of dehydration: dry mouth, little dark urine, and dizziness.

Bleeding and bruising. Nose or gum bleeding that will not stop, blood in your urine or stool, bruises with no cause, or tiny red spots on the skin.

Breathing. A new cough or shortness of breath, even months after chest radiation therapy or during immunotherapy.

Skin. Blisters, an open sore, or pus in the treated area, or a widespread rash.

Pain. Severe pain that does not get better with the methods you were given.

Swallowing and eating. Not being able to swallow food or fluids, or rapid weight loss.

Leg. Pain, warmth, or swelling in one leg (risk of a blood clot).

Immunotherapy. Diarrhea, bloody stool, a severe rash, yellow eyes or skin, a severe headache, or a change in behavior. These can happen even months after treatment ends.

Nervous system. Weakness and numbness in the legs, trouble controlling urine or stool, or severe back pain that has just started.

Mood. Feeling very hopeless, or thoughts of harming yourself. In this case too, get help; call your doctor, your family, or the emergency room.

What to say when you call

Be ready to answer these questions:

• What symptom do you have, and when did it start?
• Do you have a fever? What is your temperature?
• What medicines have you taken?
• When was your last treatment session, and what kind of treatment was it?

Every patient’s treatment plan is different; ask your doctor about your own situation.