Patient guide

What is the first visit for?

The first visit is for understanding your situation, not for rushed decisions. The doctor asks when the problem began, what symptoms you have and what checks have been done so far. Then the doctor examines you and, based on your records, tells you which other tests or scans are needed. Sometimes nothing becomes clear at this visit and you have to wait for test results. That is normal.

It is frightening to hear that you may have a blood problem or cancer. If fear or confusion comes over you during the visit, that is natural. You can ask the doctor to explain more slowly or to repeat something.

What papers should you bring?

• Your ID and insurance card, if you have them
• All earlier test results, especially blood tests, with their dates. Older results help too, because the doctor can see the trend.
• The pathology report of any biopsy or operation and, if you have them, the slides or the sample block themselves. A pathology report is the written description of a sample as seen under the microscope, and the diagnosis rests on it.
• Scans: CT, MRI, ultrasound, mammography or PET. Bring both the written report and the images on a disc or as files.
• The hospital summary and discharge sheet, if you were admitted
• Your current or proposed treatment plan, if another doctor has already written one for you
• A list of your medicines: the name and strength of each and when you last took it
• Supplements and herbal products, even the ones you take without a prescription. This matters because supplements and herbs may affect how some cancer medicines work.
• Other health conditions and allergies, and any bleeding or blood clot you have had before
• Family history: blood disease, clots or cancer in close relatives

If you do not have some of these papers, do not worry. The office of the doctor or hospital that did your test or biopsy can give you a copy. Keep a copy for yourself as well.

What should you write down for the doctor?

Before the visit, jot down a few lines:

• When did the problem start? What symptoms do you have and how strong are they?
• What makes it worse or better?
• Do you have tiredness, fever, night sweats, weight loss for no reason, bruising, bleeding or a new lump?
• Which things in your daily life have become harder?
• What is your main worry?

What questions can you ask?

• What exactly is my problem? If it is not clear yet, what is the next step?
• Which test or scan is needed, and when will the result come?
• If the diagnosis is cancer: what are its type and stage? (Stage means how far the disease has spread, and it matters for planning treatment.)
• What is the goal of treatment? Are we trying to remove the disease, control it or ease the symptoms?
• What options do I have? What are the benefits and risks of each?
• What happens if I do not treat it for now?
• How long does treatment take, and is it mostly in hospital or at home?
• What side effects might happen, and in which situations should I call at once?
• Whom and what number should I call, during office hours and outside them?
• Do I need a second opinion? (Asking this is normal, and you do not need to worry that the doctor will be upset.)

Sometimes the doctor cannot yet answer some questions because the test results are not complete. “We do not know yet” is an honest answer.

Bring someone with you

It is best to have a family member or a friend you trust come with you. During the visit you may not take in most of what is said. Your companion can take notes, ask the questions and remind you later.

The notes when you book an appointment

In the notes box of the booking form, do not write your diagnosis or medical details. It is enough to write what you are coming for (for example, “reviewing a blood test result”). You will give the details at the visit itself.

Which tests and which treatment you need is decided by the doctor after examining you and seeing your records.

Why does getting ready matter?

Treatments for cancer and blood diseases are usually given in several stages. A little preparation before the first session eases many later worries. This page is a general list. Your exact plan is written by your treatment team, and each treatment has its own needs.

Things best done before you start

1. The dentist. Some chemotherapy harms the cells of the mouth and throat and causes mouth sores. Sources advise seeing a dentist before treatment starts and, if possible, finishing any dental work that is needed. Be sure to tell the dentist that treatment is about to begin, and agree with your own doctor on when dental work is suitable, because your blood counts matter too.

2. Questions about fertility. Some chemotherapy, radiation and transplants can lower fertility, temporarily or for good. If you may want to have children, ask your doctor before treatment starts. Sometimes eggs or sperm can be stored before treatment. It is better to ask about this before treatment starts, because there are fewer options afterwards. The doctor will tell you how much time there is for this.

3. Review your medicines and supplements. Give the doctor the full list of your medicines, vitamins and herbal products. Supplements and herbs may affect how cancer medicines work, and some antioxidant supplements may do harm during chemotherapy. Do not start anything until the doctor says so, and do not stop anything on your own either.

4. Phone numbers and a thermometer. Ask the treatment team for a number that is answered around the clock. Ask at what temperature you should call. Buy an oral thermometer. Read the page “When should I call for urgent help?” ahead of time, and print or save it for your companion too.

5. Questions about vaccines and travel. Ask the team which vaccines you should have and when. If you plan to travel, ask beforehand.

6. Food. Planning ahead helps. During treatment you may need more protein and calories. Keep snacks that are easy to digest within reach, and prepare or freeze simple meals for the bad days. Details are on the page “Food and preventing infection”.

7. Hair. If your treatment may cause hair loss, ask your doctor. If you want a wig, it is best to choose it before the hair falls out, so that colour and style match your own hair. Headscarves, shawls and hats are options too. In most cases hair grows back, though sometimes with a slightly different texture or colour.

8. Practical matters. Getting to the treatment centre, someone to be with you on the first day, leave or an arrangement with your workplace, care for children or older relatives at home. Ask friends and family for help and share the tasks.

If a catheter or port is placed

Some treatments are given through a large vein in the chest or arm, and a catheter or port is placed for this. Ask how to care for it and whom to tell right away if the area around it becomes red, swollen or painful. Redness and swelling around a catheter can be a sign of infection.

Questions to ask

• What is the goal of my treatment? How many sessions will there be, and how long is each?
• Are the sessions in a hospital or a clinic? Will I need to be admitted?
• What side effects should I expect? What is normal and what is not?
• Which other tests or checks are needed before treatment?
• What should I do myself at each session (eating or not eating, clothing, a companion)?
• When and how will we know the treatment is working?

Looking after your mind

Anxiety before treatment starts is natural. Talking with family, friends or a counsellor helps. If sadness or anxiety lasts more than two weeks, talk with your doctor. This is part of treatment too.

Which treatment and which schedule you need is decided by your treating doctor.

First of all

Everyone experiences side effects differently. Some patients have few and some have more. Having or not having side effects does not show whether the treatment is working. The most important rule is this: tell your treatment team about every side effect. Many side effects can be eased with a medicine or a simple measure, but it is the doctor who does this. Do not start an anti-nausea medicine, an anti-diarrhoea medicine, a painkiller or a supplement on your own.

For side effects that are dangerous, see the page “When should I call for urgent help?” Fever during chemotherapy is an emergency.

Tiredness

Tiredness is the most common side effect during treatment. It is different from ordinary tiredness. It does not go away fully with sleep and rest, and sometimes it comes even when you have done nothing.

What helps:

• Light movement, such as walking, if your doctor agrees. Exercise can help with energy.
• A short nap in the day, under an hour. Long daytime sleep spoils sleep at night.
• A regular sleep routine
• Keep your energy for the important things and hand off or drop the less important ones.

Tell the team if you are very weak, cannot manage your usual tasks or are still tired after resting. Sometimes the cause is anaemia, and there is a way to deal with it.

Nausea and vomiting

What helps:

• Drink plenty of fluids, in small sips through the day (water, broth, tea, juice)
• Small, frequent meals, about five or six a day, instead of three large ones
• Cold or plain foods such as pasteurised yoghurt, bread and plain rice
• Avoid fatty, fried and spicy food if it has bothered you before
• Stay away from strong smells. If the smell of food bothers you, let someone else cook.
• Sit up or lie with your head raised for about half an hour after eating
• If you would like to try ginger, even as a herbal tea, ask your doctor first, especially if your platelets are low or you take a blood thinner.

If vomiting continues and you cannot keep fluids down, or you get dizzy, weak or confused, these are signs of dehydration. Tell the team at once.

Diarrhoea

What helps:

• Plenty of clear fluids (water, broth). Ask the team how much you need each day.
• Small, frequent meals
• Low-fibre foods such as white bread, pasta and stewed fruit
• Foods with sodium and potassium, such as soup, bananas and potatoes
• Avoid alcohol, dairy, spicy and fatty food, caffeine and fruit juice
• Keep the skin around the anus clean and dry
• Note how many times a day you have diarrhoea and tell the team

Do not take an anti-diarrhoea medicine or supplement without asking the doctor. Severe diarrhoea can be dangerous. If you see blood or mucus in the stool, or the diarrhoea comes with a fever or dizziness, call the team right now.

Mouth sores and pain

What helps:

• Look inside your mouth every day (sores, white patches)
• Brush with a very soft brush, gently, after meals and at night
• Rinse your mouth several times a day with a solution of lukewarm water, baking soda and salt. Ask the nurse for the exact amounts.
• Soft, moist foods, with sauce or broth
• Keep your lips moist
• Avoid crunchy, salty, spicy and sweet food, alcohol and cigarettes

If pain in the mouth or throat makes eating, drinking or sleeping hard, call the team right now. A temperature of 38 degrees or higher is an emergency.

Hair loss

Some chemotherapy causes loss of scalp and body hair, and some does not. Ask your doctor what your treatment does. Hair usually grows back within a few months after chemotherapy ends, but at first it may be thin and its colour or texture may differ.

What helps:

• A wide-tooth comb or soft brush and a gentle shampoo
• Avoid hair dryers and hot styling tools
• Cut your hair short or shave it with an electric clipper if the shedding bothers you
• A hat or sunscreen for the scalp when you are outdoors
• A wig, headscarf or shawl, whichever is more comfortable

For many people hair loss is distressing. Feeling upset, angry or embarrassed is natural. Talking with someone who understands helps.

Tingling and numbness in the hands and feet

Some medicines damage the nerves of the hands and feet. Signs: tingling, pins and needles, numbness, less feeling of hot and cold, weakness, difficulty with buttons or with opening a jar. Sudden weakness in the legs, or numbness together with back pain, is not an ordinary side effect; see the urgent section.

What helps:

• Tell the team as soon as you notice these signs. Early treatment can keep the symptoms under control and prevent further damage.
• Check your hands and feet every day for cuts or scrapes, because you may not feel the pain
• Always wear shoes, even at home
• Remove slippery rugs, and put grab bars and non-slip mats in the bathroom
• Take care against burns when cooking and bathing. Have someone else check the water temperature.

Bruising and bleeding

Some medicines lower the platelets, and then bruising and bleeding come easily.

What helps:

• A very soft toothbrush, an electric shaver instead of a razor, shoes in the house, care with sharp objects
• If bleeding starts, press firmly with a clean cloth until it stops
• Do not take headache or cold tablets without asking. Many of them contain aspirin or ibuprofen, which make bleeding worse. Read the label and ask the team for a list of medicines to avoid.

If bleeding does not stop within a few minutes, if blood comes from the mouth or nose or in vomit, if you see pink or red urine or black or bloody stool, or if you get a severe headache and confusion, call your treatment team or 115 right now. Details are on the urgent-signs page.

One last point

This page does not replace the guidance of your treatment team. Each treatment has its own side effects. Ask the team for the list of side effects of your treatment and for a contact number.

Eating during treatment

The aim of eating in this period is to stay strong, avoid losing weight without meaning to, and cope with treatment. Eating for a person with cancer sometimes differs from ordinary “healthy eating”, because you may need more protein and calories.

If you have no appetite or feel full quickly:

• Eat the most protein-rich item of the meal first (meat, fish, cooked eggs, pasteurised dairy, pulses)
• Drink most of your fluids between meals, not with food
• Eat five or six small meals a day
• Use a blender to make a high-calorie, high-protein drink
• For mouth or throat sores, cook food soft, cut it small and moisten it with sauce or broth

If you are losing weight or cannot eat, tell your doctor. You may be referred to a nutrition specialist who will write an eating plan for you.

No diet or supplement cures cancer

On social media and among acquaintances you hear many recommendations about “anti-cancer” diets, herbal distillates and medicinal plants. The claim that food or a plant can cure cancer has no basis in reliable sources. Worse, some supplements and herbs do harm during treatment:

• Supplements and herbs may affect how cancer medicines work and may reduce the effect of the medicine.
• In one study of postmenopausal women with breast cancer, those who took antioxidant supplements during treatment had a worse outcome. Do not start them unless your doctor says so.
• St. John’s wort and grapefruit juice are examples that can change the level of a medicine in the blood.

Tell your doctor about every supplement, vitamin, herb or herbal tea before you start it. Even if it is natural. “Natural” does not mean harmless.

Preventing infection

Some treatments lower the white blood cells and make infection easier. Many simple steps help.

Hands and body

• The most important step is washing your hands often. Use soap and water, especially before eating. Ask the people around you to do the same.
• Shower every day and use a fragrance-free moisturiser
• Keep wounds and scrapes clean. Wear gloves when working with sharp tools.
• Keep the area around a catheter or port clean and dry

Mouth

• Brush at least twice a day
• Do not share toothbrushes, spoons, forks, glasses or straws with anyone

Surroundings and people

• Stay away from crowds and from people who are ill
• Wear a mask when you go out
• Keep away from places where dust is stirred up, such as building sites
• Do not let a pet lick your face. If its saliva touches your skin, wash with soap and water.
• Ask the team which vaccines you should have and when, and ask before travelling if you plan a trip

Food safety

• Cook meat, chicken and fish thoroughly
• Cook eggs until the yolk and white are firm. Do not eat food made with raw egg (such as homemade mayonnaise).
• Eat only pasteurised dairy. Do not eat local or loose (unpackaged) milk, yoghurt, doogh, cheese or kashk, because they may not be pasteurised.
• Wash all fresh fruit and vegetables under running water. Do not use soap or detergents.
• Do not eat raw sprouts, raw or undercooked fish, or sushi
• Avoid buffets and self-service food, and food that is past its date or smells odd
• Put leftovers in the fridge quickly and eat them within three days
• Wash your hands before and after cooking. Keep the board and knife for raw meat separate.

If your treatment team has given you special rules, follow them. The exact rules are set by the treatment team based on your own situation.

When is the risk higher?

The lowest white blood cell count after each round of chemotherapy usually comes about 7 to 12 days after the medicine and can last as long as a week. Ask your doctor when that is for you. Extra care is needed during this time. If you get a fever of 38 degrees or higher, tell the team at once. A fever at any point in treatment is an emergency, not only on these days.

Talking with the team

Ask: What should I not eat? Can I see a nutrition specialist? Which supplements should I not take? What should I do if I cannot eat?

You matter too

When someone you love becomes ill, everyone’s attention goes to them. But the person supporting the patient also worries, is afraid and gets tired. This page is for you.

What does your help look like?

Every family is different. Supporters usually take on tasks like these:

• Getting to visits and treatment sessions
• Preparing food and doing housework
• Going along to visits, taking notes and asking questions
• Keeping the file, test results and medicine list
• Reminding about medicines (as the doctor has directed)
• Helping with personal care on weak days
• Coordinating with family and friends
• Listening and being there

You do not have to do all of it yourself. Talk with the patient about which help they want and which they do not.

At visits

• Agree with the patient on what your role at the visit is
• Write the questions on paper before the visit
• Take notes. The patient may not take in some things at the visit.
• Keep the treatment team’s phone numbers on your own phone too, and read the page “When should I call for urgent help?” If the patient has a fever, you need to know what to do.

Talking with the patient

• The patient may feel fear, anger, anxiety or sadness. All of these are natural.
• Do not force them to talk. You decide when and how much to talk, and so do they.
• Many loved ones mean well but do not know what to say. Sometimes just being together is enough.
• If the patient seems depressed (more than two weeks of sadness or loss of interest), talk with the doctor. Depression can be treated.
• Every patient has the right to make their own decisions. Give your opinion, but the decision is theirs.

When children are at home

• Tell the truth in a way that suits the child’s age. Even young children sense that something has changed. Sources say that telling the truth is better than leaving a child to imagine the worst.
• Say clearly that the illness is not their fault and that nothing they did or thought caused it
• Tell them that feeling upset, angry or scared is normal
• Ask teenagers for their views, involve them in decisions and give as much detail as they want
• Reassure the child that they will be looked after

Watch for infection

If the patient is having chemotherapy and their white blood cells are low, supporters have an important role:

• Wash your own hands often and ask the patient to do the same
• If you have a cold, a fever or are ill, keep your distance from the patient
• Take care to keep the home away from sick people and crowds
• Follow food safety (the page “Food and preventing infection”)

Look after yourself

Signs of burnout: tiredness, trouble sleeping, change in appetite or weight, headaches, anxiety, sadness and a short temper. If these changes last more than two weeks, talk with your own doctor.

What helps:

• Set aside 15 to 30 minutes a day for yourself: a nap, a walk, a cup of tea, a call to a friend
• Do not drop your friendships and simple habits completely
• Talk with someone you trust, a counsellor or a social worker
• Join support groups
• Sleep and eat well and do not put off your own check-ups
• Getting angry or frustrated is not bad. It is part of caring too.

Ask for help

Write a list of the things others can do: shopping, taking the children to school, taking the patient to visits, passing news to relatives. When someone says “Is there anything we can do?”, name one of them. Some people do not offer help, and that is natural. State your need plainly before resentment builds up.

“If you do not look after yourself, you cannot look after others” is a sentence that appears in the sources too, and it is true.

The support number on this site is for appointments and arranging services. It is not a medical emergency line. If it is urgent, call your own treatment team or 115.

If you are having chemotherapy or have had a transplant and you have a fever

Fever during this period is an emergency. If your mouth temperature is 38 degrees Celsius or higher, tell the treatment team at that moment. Do not wait for morning, the end of the week or an office appointment.

Why is this so important? Chemotherapy and transplants can lower the white blood cells that protect the body against infection. In that state an infection can become serious very fast, and sometimes fever is the only sign of it. Your body may not feel bad yet, but an infection may already have started.

Step by step:

1. Take the temperature correctly. Measure with an oral thermometer. Check your temperature whenever you feel hot, shivery or unwell. Clean the thermometer before and after each use. If your white blood cell count is low, never use the thermometer rectally.
2. Call at once. Phone the treatment team’s number, even in the middle of the night. If nobody answers quickly, do not wait; go to the nearest emergency department. Ask the team for this number before treatment starts, and write it both in your phone and on a paper beside the telephone.
3. Do not take a fever reducer or painkiller before calling. Any medicine that lowers fever, including aspirin, ibuprofen and paracetamol, may hide a more serious sign. Speak with the doctor or nurse before taking it. Some teams want the fever left untreated and want you not to take anything. Ask your own team what they want you to do.
4. If you cannot reach the team or you feel bad, go to the nearest emergency department without delay. Ask someone to take you. Wear a mask, and say at the start that you are having chemotherapy or have had a transplant.
5. If you feel very unwell (severe shivering, confusion, shortness of breath, pale and cold skin), call 115.

A few important points:

• 38 degrees is the number most sources use. Your team may give a slightly different number. If you have been given another number, use that one. If you have not been given a number, ask the team.
• It is not always fever. In a person whose white blood cell count is very low, infection may come without fever, or even with a temperature lower than usual. Also take seriously shivering or cold sweats, pale, cold and sweaty skin, cough or shortness of breath, new confusion, dizziness or falling, and pain when passing urine, and tell the team.
• After each round of chemotherapy, the lowest white blood cell count is usually about 7 to 12 days later and can last as long as a week. Ask your doctor when that is for you. A fever at any point in treatment is an emergency, not only on these days. After a transplant, the period of infection risk is much longer, and the treatment team will tell you how long it lasts.
• If you are in doubt, call. You are not a bother.

Call 115 or go to the emergency department right now

(115 is the emergency number inside Iran.)

If you have any of these, do not wait. Do not drive yourself:

• Sudden shortness of breath or new or severe chest pain, sharp or pressing (especially if it gets worse when you breathe in)
• Coughing up blood
• Vomiting blood, or black or bloody stool
• Bleeding that does not stop with firm pressure. Press firmly on the spot with a clean cloth. If it does not stop, go to the emergency department.
• New or worsening confusion, severe drowsiness, a sudden, severe headache or a sudden change in vision
• Severe dizziness or fainting
• Signs of a severe infection in the body (sepsis): fast heartbeat, pale, cold and sweaty skin, trouble breathing, confusion. This state can get worse very quickly.
• Passing no urine, or very little dark urine, together with severe weakness
• Weakness that, for more than a day and night, does not let you get out of bed
• Signs of a stroke: one side of the face drooping, being unable to lift both arms fully or weakness in one arm or leg, a heavy-feeling tongue, or slurred and unclear speech. Call even if the signs go away quickly.
• Back or spine pain with weakness, heaviness or numbness in the legs, being unable to pass urine, or losing control of your bladder or bowels (this may be pressure on the spinal cord). Do not wait to reach your treatment team. The sooner this is checked, the better.
• A severe allergic reaction during or after treatment: sudden swelling of the lips, mouth, tongue or throat, or trouble breathing. If you are having an infusion, tell the nurse at once.

Call your treatment team right now

These signs may need quick treatment. Do not wait:

Signs of infection (other than fever):

• Shivering chills
• Cough or sore throat
• Diarrhoea
• Ear pain, headache, sinus pain or a stiff, painful neck
• Skin rash
• A sore or white patch in the mouth or on the tongue
• Redness or swelling, especially around a catheter or port
• Bloody or cloudy urine, or pain when passing urine

Signs of bleeding (when platelets are low):

• Bleeding from the nose, gums or mouth that does not stop within a few minutes
• Tiny red or purple spots on the skin, or a lot of bruising for no reason
• Pink or red urine
• Vaginal bleeding outside your period, or a period much heavier than usual

A clot in an arm or leg:

• Throbbing pain or cramp, swelling and warmth in one leg or one arm. If, along with it, you suddenly become short of breath or get chest pain, call 115.

Severe vomiting and diarrhoea and dehydration:

• You cannot keep fluids down
• Dizziness, weakness or confusion (signs of dehydration)
• Blood or mucus in the stool, or diarrhoea with a fever
• Severe diarrhoea can be dangerous and sometimes needs treatment in hospital. Tell the team about any diarrhoea, and ask how many bouts a day mean you should call.

Mouth:

• Pain in the mouth, lips or throat that makes eating, drinking or sleeping hard

Spine pain, if you have or have had cancer:

• New or severe pain in one spot of the back or neck, pain that does not get better with painkillers, wakes you at night, or wraps around from the back to the chest or belly

If you have had a donor transplant, signs of graft-versus-host disease (GVHD):

• Itchy, red skin, diarrhoea, mouth sores, yellow skin, dry and painful eyes

If you are having immunotherapy:

• Report new diarrhoea, a rash or shortness of breath to the team right now. It cannot be known in advance which side effect will come, when, or how severe.

Before a problem comes up

At the first treatment session, ask the team and write down:

• Which number do I call, during office hours and outside them?
• From what temperature should I call?
• Which signs mean going straight to the emergency department? To which hospital?
• Am I allowed to take a fever reducer or painkiller?
• When is my lowest white blood cell count?

Have an oral thermometer at home. Keep the numbers and your medicine list on your phone and on paper, so that your companion can call too.

This list does not replace the guidance of your treatment team. If your team has given a different instruction, follow that. If you are worried, call.